The most important word here is education. Not only for your child but for all those around him/her.
Because without education and awareness, the school experience can be a disaster for your child.
Take it from me. I went to five different schools, after I was diagnosed with epilepsy.
People didn’t know what to do with me, about me, epilepsy. Nada. I was on my own. Having four seizures a day.
One day the Dean called and asked my mother if she knew where I was. (I suppose he was looking for a truant.)
She calmly explained that yes, she knew exactly where I was. I was upstairs in a coma, because of Dilantin toxicity.
He was speechless. And I bet he didn’t even know what Dilantin was or was it was for!
But that was back in the dark ages. These days enlightenment and understanding are the mantras.
Or at least, that’s our goal. Because as we all know, for those of us with epilepsy, the negative attitudes of others often does more harm than the seizures themselves.
The “whole child” approach…
Because of the prevalence of learning issues and other developmental problems among children with epilepsy, experts now acknowledge the importance of treating the “whole child,” rather than simply treating the child’s seizures.
This means addressing the social and psychological aspects of the child’s well-being, in addition to medical concerns.
Controlling seizures, although extremely important, is only part of the equation of adequately caring for an individual with epilepsy.
Equally important is enabling children with epilepsy to reach their full potential in terms of learning, socialization, communication, and enjoyment of life.
This ambitious goal requires a strong commitment from and a collaborative approach among doctors, patients, families, and educators.
Even when seizures are well controlled, epilepsy may present a host of other issues that can impact a child’s development and ability to function normally.
Cognitive impairments that affect language, memory, attention, and other abilities critical to normal development are common among people with epilepsy.
As many as half of those with the disorder experience learning problems, ranging from mild difficulties to severe dysfunction.
Although cognitive problems are neither unique to epilepsy nor inevitable, a growing recognition of their prevalence has broadened the focus of epilepsy treatment and intervention.
Yours is not just a child who has epilepsy, they have hopes, dreams, fears. They too want to socialize with others, communicate, and enjoy life.
Having epilepsy doesn’t mean they can’t reach their full potential and lead a rich life.
The best way to prevent misunderstandings about epilepsy at school is to step in early.
At the beginning of the year, go talk to your child’s teacher and school nurse.
Explain that your child has epilepsy.
You may want to take some brochures about the condition.
Getting the right information to the right people at school early can make a big difference in your child’s school experience.
This advice doesn’t only apply to teachers, of course.
But while it would be nice if every teacher, coach, nurse, and principal in the country was well-informed about epilepsy, unfortunately this isn’t the case.
Often, the most important things for teachers to know about your child’s epilepsy are what to observe during a seizure and how to manage your child’s seizures.
Give the teachers a list of instructions to follow in case of a seizure.
(The EFA has excellent Seizure First Aid Pocket Cards) http://www.epilepsyfoundation.org/resources/medical/firstaid.cfm
Ask officials to post “seizure management” first aid tips in visible locations around the school.
To help you, the Epilepsy Foundation has tons of useful materials: books, kits, pamphlets and videos.
They target many health professionals, parents, children, teens and other populations and are available for sale through the Epilepsy Foundation Marketplace.
For a complete and current list of all products and current prices, please visit the Epilepsy Foundation Marketplace. http://www.epilepsyfoundation.org/resources/bookscatalogetc.cfm
Also, the school should have a Plan of Action in place, in case your child has a seizure during the school day.
The plan should include — what to do in case of a seizure, when to call you, and when to call an ambulance.
Ideally, the Plan of Action should be created by you and your child, in consultation with your child’s doctor or members of the epilepsy care team if required.
It can then be discussed with school personnel.
Also, teachers or educational assistants may sometimes have to give medications to your child.
Even if medication is not given during the school day, you should let school staff know that your child is taking medications for their seizures, so they can watch for medication side-effects.
It’s helpful to have school staff inform you about your child’s seizures during the school day, as well as any other unusual symptoms that might relate to the medications or occur around the time of the seizures.
Complete information about your child’s epilepsy may help school personnel deal appropriately in everyday decisions and emergency situations.
Make yours an “Epilepsy Smart” school…
Being “Epilepsy Smart” is important and relevant for all schools.
An “Epilepsy Smart” school is one that understands epilepsy.
It puts in place inclusive practices to support a student with epilepsy achieve their academic potential and develop positive social relationships.
After all, a large proportion of every child’s life consists of the time they spend at school.
Along with academic learning, children also learn how to communicate, interact, and socialize with their peers.
Children with epilepsy must sometimes cope with more than the usual challenges associated with school.
They may struggle with learning difficulties, behavior problems, or social and emotional difficulties.
It takes a whole school approach working with the student with epilepsy, other students, teachers, staff, parents and the school community.
In order to set up a positive classroom environment and work towards making school as rewarding as possible for your child, it is important to promote a partnership between your family and key individuals from the school.
It’s important to develop an ongoing relationship with your child’s teacher to monitor his academic progress as well as his social relationships with peers.
How much participation you should expect from teachers will depend on your child’s age and stage of development, their epilepsy severity, and how much extra attention they requires.
By understanding the important aspects of epilepsy management, your child’s teacher can help with your child’s healthy adjustment to the classroom, including healthy peer interactions.
Teachers also play an important part in ensuring your child’s safety, not only in the classroom but in the playground, on school trips, and during sporting activities.
A knowledgeable and supportive teacher will potentially reduce your anxiety and hopefully prevent minor crises from getting out of hand.
A poorly informed or misinformed teacher who is very anxious about having a student with epilepsy in the classroom can add to the adjustment and management difficulties you and your child encounter.
Keep the lines of communication open between you and your child’s school.
Not only so that everyone involved in your child’s care is aware of their current situation, but so that you can work together to address any problems when they arise.
Coping with people at school who don’t understand epilepsy is just one example of the stigma that you and your child may face at times.
“Some people don’t understand epilepsy. They think it’s a mental illness or a kind of retardation,” says William R. Turk, MD, Chief of the Neurology Division at the Nemours Children’s Clinic in Jacksonville, Florida.
“That’s obviously not true, but the reaction that children with epilepsy get to their condition can really shape their outcome.
Even if your child is very smart, if his teacher treats him like he’s stupid because he has epilepsy, that can become a self-fulfilling prophesy,” says Turk.
Ask your teacher to discuss epilepsy with the class in a way that is appropriate for the age level and that would be comfortable for your child.
Having a seizure at school can be embarrassing for a child and frightening for others.
It’s better if the teacher discussed it with the students beforehand.
Talking to students about epilepsy can help prevent teasing and correct some of the inaccuracies children may have heard.
It’s important to fight these misunderstandings and prejudices when you encounter them.
Explain that children with epilepsy are usually just as capable as other kids…
A child with epilepsy isn’t defined by this condition…
Instead, epilepsy is usually a small part of his or her life.
“I think it’s very important for people with epilepsy not to hide it,” says Turk.
In the long run, every child with epilepsy will benefit from your openness.
But children may worry about answering questions from classmates.
For example, if a classmate asks, “Can other people catch seizures?” your child could explain that “Epilepsy isn’t like a cold, you can’t catch it from somebody else.”
Helping your child develop responses in advance can ease the anxiety related to responding to other students.
Having an information session will teach your child’s classmates about epilepsy and can help to create a supportive environment.
In this session, the classmates can learn about your child’s condition and ask any questions.
Try and focus on concerns that classmates raise.
Encourage children to ask questions.
Children take their cues from adults. (You might even have the school nurse there.)
Being straightforward, answering questions honestly, and reassuring children that they have no need to be scared, can help create an environment of support and understanding.
As for parents of these kids, it’s your decision how much information you wish to share with them.
You might wish to share some information with others to enlist their support.
Because it’s important for them to know how to handle a seizure if your child goes to their house to play or study.
Sharing information about your child’s condition is as important as respecting your child’s privacy.
Striking a balance between disclosure and privacy is something that you can decide with your child.
Think about what you would like to say in order to maintain your child’s privacy.
Most children with epilepsy attend regular classes, even though, in some cases, they need special aides to work with them.
Regular classes offer the opportunity for children with epilepsy and other disorders to enjoy their education and to be in the social environment of other children, most of whom don’t have disabilities.
By going to mainstream classes, a child with epilepsy will be exposed to a wider array of educational opportunities.
They will have the chance to develop lasting social relationships with other children with and without disabilities, and will be more likely to feel like a regular child instead of a child with a disability.
That’s not to deny the existence of the epilepsy, but it emphasizes that most children with epilepsy have the potential to learn and accomplish all the things that other children can.
Also, help school personnel understand the way in which epilepsy and treatment for seizures can place children at risk for learning or behavioral problems.
Encourage the school to treat your child as they would any other child.
It’s important for your child to interact with their peers and not just with adults.
Children who feel they have more support from classmates are less likely to feel depressed and anxious.
Some ideas that have helped others are:
Having a “safe friend”…
Find a responsible child a few years older than your child, perhaps a neighbor or another student, to be your child’s buddy…
This friend can watch out for your child, lend an ear if your child is having problems, and provide a sense of security…
Having a peer tutor: A student in your child’s class, or in a higher grade, may take on the role of “tutor”… (The details of the role could be discussed with the teacher.)
Depression is “definitely a problem for young adults with epilepsy, and I think for kids too,” Turk says.
Kids with depression may have low energy, a limited attention span, and bad grades.
Parents should not assume these symptoms are normal for children with epilepsy.
Everyone gets depressed, right?
Turk says that parents who notice their child is having problems in school should step in quickly.
“Don’t stick your head in the sand,” he says. “You need to get it checked out.”
The learning disability may have little to do with the epilepsy itself.
It may be something that can be corrected easily.
And I can’t emphasize enough how important your child’s self-esteem is.
Make sure to highlight your child’s strengths and areas of interest.
Just because a child has epilepsy, doesn’t necessarily make them an underachiever.
This is especially important because it can sometimes be difficult for others to look past the epilepsy to see your child’s abilities.
Be forthcoming about what cognitive and physical limitations your child has, so teachers can make the necessary accommodations.
This might include things like making allowances for extra time needed to understand instructions or finish exams, especially on days just before or after a seizure.
Plenty of children with epilepsy are straight-A students.
That being said, many children with epilepsy test in the “average” I.Q. range, but they are more likely than others to have learning problems that affect how well they do in school.
This could be due to a number of reasons, including:
Side-effects from medication that make a child tired or drowsy…
Anxiety about having a seizure…
Missing school for medical appointments…
“Blanking out” due to absence seizures, which are often not recognized…
Problems with memory and learning in the part of the brain where the seizure occurs.
If you are aware of these potential problems, you can work with teachers on possible solutions.
Ask the teacher to let you know if your child seems unusually tired, to send home work your child missed and to keep you posted on how your child is doing.
Most teachers and schools want to help children with special needs.
They want to make sure they understand how epilepsy affects a child and what to do if a child has a seizure.
Try to work with them as partners.
Show appreciation for their work, give them information that can help them understand your child’s needs and encourage your child to complete assignments.
Some specific learning problems that children with epilepsy can experience are:
Academic problems – difficulties with reading, writing, math and language problems…
Comprehension – speech, communication, and concentration…
Attention – a child may be inattentive, hyperactive, or both. Their attention may only last for short periods of time…
Slowness – it may take a child longer to process new information or to complete tasks compared to other children…
Memory – a child may study a topic many times, but not remember it the next day.
In addition to ongoing learning disabilities, children with epilepsy may have intermittent disruptions in their learning that specifically relate to their seizures, sleep patterns, and medications.
These disruptions in their ability to attend and learn can change from day to day, or even hour to hour.
Night-time seizures or poor sleep patterns caused by abnormal brain activity can increase fatigue during the school day.
As a result the child is less attentive and less available to learn.
Frequent “invisible” seizure activity in the brain during the school day can result in slower processing, consolidation, and retrieval of information recently learned.
Children who have seizures, sometimes even a single seizure, during the school day can experience disruptions in their memory that cause them to forget what they have just learned.
In some cases, they can’t remember much about what happened just before or for some time after the seizure.
Some anti-epileptic medications (for example, Topiramate) can slow down processing of information in some children, while other anti-epileptic medications can induce fatigue that decreases the child’s availability to learn.
If your child is falling behind and needs extra help, consider the possibility of extra tutoring.
Seeking help from a guidance counselor early on, regarding future school plans, is important.
Stay on top of your child’s progress at school.
Talk to the teacher about which subjects your child does well in and which are more difficult.
Set up regular times to meet or communicate with their teacher to discuss your or the teacher’s concerns.
If a child is not doing well in mainstream classes, it is often helpful for parents to meet with the teachers to learn if the cause of the problems can be identified, and if special testing is necessary.
In addition, consultation with the child’s doctor may provide insights.
For example, attention deficit disorder may be causing the school problems.
Some children are tired and need to rest or sleep following a seizure.
Other children are able, either immediately or after a few minutes, to resume whatever they were doing prior to the seizure.
It may be necessary to modify classroom activity slightly while the child recovers.
For example, if a child has a seizure during math class, they may not have the capacity to resume his work immediately following a seizure.
He may need to spend some time just listening to the teacher or working alongside another student.
Whenever possible, a teacher should try to maximize the amount of instruction time a child receives by allowing him to remain involved in classroom activities.
It’s also important that your child have an appropriate assessment so that they can be in a program that matches their abilities.
A large majority of children with epilepsy are best served by mainstream classes.
Just because special education is recommended, does not mean that it is necessary.
Many receive special education services partly or entirely, in the regular classroom.
Instruction may take place in regular classrooms, or in separate facilities for all or part of the day.
But, in most cases, the recommendation is valid and should be followed.
If parents disagree with the school’s placement, they can appeal or seek an outside assessment by a psychologist or neuropsychologist.
It may also be helpful for parents to observe the child in mainstream or special education classes to better judge the proper balance.
Schools are required to deliver services in the “least restrictive environment,” meaning the regular classroom for as much of the day as possible.
Some children do require many special classes or a special school, and emotional issues often arise when children are assigned to special education programs that remove them from the mainstream.
Sometimes, the children are placed with other children who have severe emotional or behavioral problems and thus provide poor behavioral models.
For some parents, the recommendation that their child attend special classes signals that the epilepsy or associated problems are severe and that their child is not “normal.”
Children who attend special education programs are aware that they are not in the mainstream, particularly if they were formerly enrolled in regular classes.
The word “special” is key.
Parents and teachers should emphasize that the child is special, not handicapped, disabled, or less bright.
They should not deny or avoid discussing the epilepsy or other disabilities, but should emphasize the positive.
Parents may wish to discuss with the child why he or she goes to a certain school while brothers and sisters or other children on the block attend another school.
The parents can highlight some of the advantages of the special school, such as more teachers, more enjoyable activities, and more children who are like him or her.
Also special education programs are designed to meet the special needs of children with disabilities by supplementing or adapting the regular curriculum.
Students may also be assigned to special programs in physical education, occupational and physical rehabilitation, music education programs, home instruction, or instruction in hospitals and other institutions.
These classes and programs recognize that some students can be educated but have mental or physical impairments that make it essential to tailor their education to their special needs.
The variety of special education programs offered by each school system reflects the types and severity of the child’s disabilities, the educational emphasis, the student-to-teacher ratio, the funding for quality teachers and equipment, and other factors.
Children with frequent and severe seizures who also have orthopedic and emotional problems, on the other hand, obviously need a specialized program, but many children fall between these two extremes.
Remember, every child with epilepsy is unique.
Success and self-esteem are what will determine your child’s future.
Another article of interest: Special Education — Expectations and the Law http://epilepsytalk.com/2013/09/08/special-education-expectations-and-the-law/
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About the author
Phylis Feiner Johnson has been a professional copywriter for 30 years. She also spent 20 years with epilepsy. She writes from the heart to increase education, awareness and funding for epilepsy research. For further information, contact The Epilepsy Foundation of Eastern Pennsylvania at http://www.efepa.org/ and please make a contribution to become an advocate, too.