When a six-year-old girl nicknamed Hsiao-chen (小珍) had an epileptic fit during a noon-time nap, she scared the wits out of her kindergarten nurse, who screamed for help and scared the other children in the room, including Hsiao-chen herself. Not even her parents knew that she had sleep-induced epilepsy, as it was the first time she had suffered a seizure. Since then, Hsiao-chen has been agitated and afraid to fall asleep.
The definition of epilepsy, according to the Epilepsy Foundation of American, “is a medical condition that produces seizures affecting a variety of mental and physical functions. A seizure happens when a brief, strong surge of electrical activity affects part or all of the brain.”
A boy named Yu Shih (于蒔) is another sufferer. Depending on the part of the brain in which the surge of electrical activity happens, Yu experiences various symptoms, such as passing out in class, smelling weird odors, suddenly feeling afraid or running out and standing on the balcony “wanting to fly.”
NAME CALLING
“Yu’s behavior often causes his teachers difficulties, and Yu is sometimes called names by other children,” his mother said.
A survey conducted by the Children’s Epilepsy Association of Taiwan on students between fourth grade and middle-school age, showed that more than 70 percent of children interviewed did not know what epilepsy was, with only 20 percent knowing what caused it.
More than 80 percent of schoolchildren wanted epileptic children to be up front about their symptoms so they may be of more help.
The association said that as elementary schools’ health education curriculum does not cover epilepsy and as a result of teachers’ lack of knowledge about epileptic syndromes it is difficult for children to differentiate epilepsy from other neurological conditions.
Though many epileptic children’s classmates are willing to lend a helping hand, the wrong sort of help and incorrect knowledge may do more harm than good, Yu’s mother said.
“I’ve seen how children try to hold down a child suffering an epileptic attack. I told them to keep the child on his side, make sure he can breathe and wait for the seizure to end,” she said.
Epileptic children’s greatest difficulty after entering school is often ignorance of and sometimes even the stigmatization of epilepsy. Such ignorance indirectly harms the epileptic child at school, such as a prohibition on swimming in case they have an attack.
Association chairman Wang Hui-hsiung (王輝雄) said that swimming was fine as long as the epileptic child is accompanied.
ACTIVITIES
Yu’s mother feels schools restrict epileptic children’s range of activities because of a shortage of staff to watch over them.
In an effort to help teachers gain a better understanding of Yu’s condition, his mother said she gathered information on epilepsy and talked to Yu’s teachers, even acting out how Yu may look should he suffer a seizure.
Luckily, Yu’s mother said, the teachers not only accepted Yu but have even gone to classes on the subject of epilepsy, as well as appointing a helper to assist Yu participate in class.
“Not all teachers are so accepting, however. I know of some parents with epileptic children who have even hinted that their children should be transferred elsewhere,” she said.
Meng Ying-Ru (孟瑛如), director of the National Hsinchu University of Education’s Department of Special Education, suggested that teachers should use structured teaching methods to let children anticipate what will be taught, because sudden pressure can lead to seizures.
“Epileptic children can’t adapt to highly pressurized teaching,” Meng said.
Chen Pei-chi (陳佩琪), director of pediatrics at Taipei City Hospital’s Branch for Women and Children, said that it is best to inform a teacher if your child is epileptic.
“Epileptic children can still have safe and healthy school lives if they have someone with them and parents have spoken with doctors and teachers,” she said.
“Parents who have children with epilepsy under [medicated] control should let others know, or risk increasing the potential danger faced by their children,” Yu’s mother said.
SHAKE OF HEAD
Even though knowledge of epilepsy was brought to the attention of schools nationwide about 15 years ago, School Nurses Association of the Republic of China chair Cheng Lee-chen (鄭麗貞) shook her head when commenting on the issue of professional knowledge of epilepsy at private schools and nurseries.
According to Cheng, private schools often do not even have school doctors on hand, nor are their teachers sufficiently knowledgeable on how to care for epileptic children.
“It’s a tough nut to crack and healthy yet vulnerable children suffer because of it. If the teachers don’t know about epilepsy, how can you expect other children to help,” she said.
Because of the suddenness of epileptic attacks and full-body seizures, the association’s secretary-general, Kuan Shang-yung (關尚永) suggested that teaching other children how to help would be of more use than having sufferers take protective measures, such as wearing helmets.
“Don’t underestimate the influence of peers,” Kuan said. “Sometimes, the psychological trauma caused by their treatment at school is worse than the epilepsy itself.”
ADDITIONAL REPORTING BY CHEN YI-CHING AND LIN HSIANG-MEI
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