Parents of children with epilepsy take remarkable leaps of faith each day when their school-aged children enter the halls of learning. Depending on the frequency and severity of their child’s seizures, a parent may have varying degrees of concern in entrusting school staff with their child. Questions such as, “What if my child has a seizure in school- will the teacher be able to react appropriately?” “Will the school restrict my child’s activities?” “How can I help educate the school staff?” are common amongst parents of children with epilepsy. Some parents choose to utilize their local Epilepsy Foundation for support while others create their own means of advocating for their child. Each family’s journey is unique. But one common thread binds them all together- the best interests of their children.

How Informed Are School Staff About Epilepsy?

“Some administrators and peripheral support staff are well-informed about epilepsy and the varying types and some are not”, said Phil Gattone, former Executive Director of The Epilepsy Foundation of Greater Chicago. “I think the key is communication between the parent and the school staff. Sometimes the school needs a more conceptual education about epilepsy, the world of seizures, and then the individual child’s seizures.”

As both a parent of a child with epilepsy and former executive director of the Epilepsy Foundation, Gattone has experienced both sides of the coin. He has been the fearful parent and the person other parents rely on to help educate the school about epilepsy. “I am a parent of a child with epilepsy and I have to tell you it is extremely scary. You just don’t know how the school is going to respond. We were fortunate because when our son was entering first grade, his teacher called to learn more about epilepsy and actually came to our house with the school nurse to obtain more information on how the school could help him,” said Gattone. He believes that his family’s open communication with school staff increased their knowledge and awareness about epilepsy, and as a result his fear that the school couldn’t properly care for his son was greatly reduced.

However, Gattone is realistic and recognizes that not all schools are receptive and proactive in acquiring information about epilepsy. He contends that in many cases school administrators believe they have enough knowledge about epilepsy and do not require further education from parents or Epilepsy Foundation educators. “It is not a lack of interest per se., I think it is more of a belief that they have an adequate knowledge base and are equipped to handle a child with seizures. Yet, I have seen the shock on the faces of staff persons that had no idea that there are more than just tonic clonic seizures, that children can have very subtle seizures as well.”

Avoiding An Adversarial Relationship: Communication Is Key

Just as parents fear for the safety and well-being of their child so too do school staff worry about their students. However, this reciprocal fear can often lead to a breakdown in communication and ultimately an adversarial relationship between parents and the school.

According to Gattone, the most common fear amongst teachers is lack of knowledge regarding appropriate first-aid techniques to use during a seizure. He believes that fear can be eliminated through epilepsy education. “Teachers are more afraid of epilepsy than asthma, according to a recent study,” said Gattone. “The obstacle both teachers and parents need to overcome is getting adequate information to teachers in order to raise their comfort level. Teachers are afraid they won’t know what to do if a child has a seizure. Teachers also need to be educated in understanding the effects of seizures on learning abilities.”

For Cynthia Folio, mother of twelve-year old Lydia, the school’s fear has manifested in other ways. “I think the school has been receptive to the epilepsy education I have brought to the classroom, but there was still fear there. I think mainly it was fear of liability,” said Folio. “At first Lydia had numerous drop seizures each day and she needed to wear a helmet for protective purposes. But, as we adjusted her medication, the frequency of her seizures decreased tremendously and we asked the school to remove her helmet. But they were afraid if Lydia didn’t wear her helmet all day, they would be liable if she suffered a head injury,” said Folio.

Nancy Stevenson, mother of Brady, has experienced similar frustrations with her son’s school. “The staff at Brady’s school just didn’t understand ictal vomiting. They thought he was sick with a stomach flu. So I had to push Brady’s case manager to continue to educate the staff. It was very frustrating because every time Brady would vomit the teachers would say, ‘You shouldn’t have come to school if you were sick’. In fact, Brady suffered so much with ictal vomiting that his doctor wrote a note to the school stating that Brady was unable to tolerate being in school full-time. With the doctor’s recommendation and Nancy’s persistence, the school conceded to provide more homebound services for Brady. According to Nancy, she has had to “push” consistently to get services for Brady. For support, she has relied on Parent Advocacy Coalition for Educational Rights (PACER). Through PACER she has received help in learning how to advocate for Brady in Individualized Education Plan (IEP) meetings as well as navigate through the bureaucratic maze of the school system.

Advice for Parents

Gattone encourages parents to reach out to their local Epilepsy Foundation affiliate and believes the H.O.P.E. program (Helping Other People with Epilepsy) is an invaluable resource for parents of children with epilepsy. H.O.P.E. is an educational program which trains people with epilepsy to be “patient educators” throughout the epilepsy and neurology communities. The program includes three core educational modules: Epilepsy & Seizures, Impact of Epilepsy and Advocacy & Self-Management. Each mentor must successfully complete the training program to become a certified H.O.P.E. mentor. Parents can schedule a H.O.P.E. presentation at their child’s school by calling (877) HOPE 4 YOU or (877) 467-3496.

Although Folio and Stevenson chose different methods of educating the staff at their child’s school they both agree that parents need to be actively involved in getting the services their child needs. “I think there is a partnership now with Lydia’s school, but there wasn’t always. I’ve had to fight to get an aide for her, which initially they wouldn’t do. I had to fight for seatbelts on the bus, and for placement in an inclusive classroom. I’ve even called another IEP meeting when I felt the previous ones did not accurately reflect her needs and our goals for Lydia,” said Folio. Folio has also employed mediation services when the adversarial relationship between her and the school was at its peak. Stevenson has also participated in the IEP process and advises parents to be prepared and not be afraid to say, “I don’t like the way you are handling this.”

For these parents, the journey continues as their children battle seizures of varying severity within a system that often finds their child’s seizure disorder bewildering and frightening. Yet despite their fear, these parents have formed partnerships with their child’s school, and as a result have found small pieces of comfort along the way.