Young Children
Do children with epilepsy tend to have other difficulties in school they must overcome?
Yes, children with epilepsy tend to have:
Additional disorders, such as anxiety, depression, or attention deficit disorder
Problems with bullies or stigmas
At a higher risk for suicide, injuries, or early death
Children with epilepsy also may suffer from side-effects associated with their epilepsy-related medications which may impact their ability to focus. Common side-effects of epilepsy treatment include drowsiness and memory difficulties, so even if a child’s seizures are under control, the side-effects from their medications may still hinder their ability to participate in school to the best of their ability.
In addition, while many children with epilepsy test within the same range as other children, and are quite normal and healthy, their achievement at school may be lower.
There may be several reasons for this, including side effects from the medication, days spent out of school for tests or doctor visits, and anxiety about having seizures at school. Memory or attention may also be affected.
After a seizure a child may be unable to remember anything that happened the previous day or immediately afterwards. Testing for learning disabilities may reveal specific difficulties related to where the seizures are occurring in the child’s brain.
How can teachers and staff help?
Teachers and staff can help by learning how to recognize and respond to a seizure. There are several programs online or in-person that will certify someone in seizure first aid. Visit the
link for more information.
What protections are in place to protect children with disabilities?
Some children with epilepsy will need specialized planning, with goals and objectives carefully spelled out, developed in partnership between the parent and the school.
School activities should be open to all children, including children with seizures.
Various federal laws (Section 504 of the Rehabilitation Act of 1973, the Individuals with Disabilities Education Act and the Americans with Disabilities Act) and state laws protect children with disabilities from discrimination on the basis of disability.
What other difficulties might having seizures in school cause for chidlren with epilepsy?
Having seizures at school can be socially damaging to a child and frightening to others. However, it doesn’t have to be.
A well-informed, confident teacher and a supportive school nurse and school administration can make all the difference in the world.
There are several steps parents can take to create a more accepting school environment for a child.
Advice for Parents
What can a parent do to help their child with epilepsy succeed safely in school?
Share information with your child’s school.
Discuss epilepsy with their classmates.
Make sure you have relationships with the staff.
Prepare for seizure emergencies.
For more information see the
link.
How do I talk to my child’s classmates about epilepsy?
Reach out to the staff and keep your child involved, possibly coming up with an education plan.
Be a presenter for the day.
Contact your local Epilepsy foundation for help. The staff can even come and do the training.
What signs should I be paying attention for other hints that my child might be struggling?
Often children who have epilepsy have learning difficulties. Be on the lookout for:
Medications that are making your child drowsy
Frequently missed school days because of appointments
Absence seizures causing your child to blank out
Your child worrying over having a seizure
Attention disorders
Problems with learning or memory due to where the seizure is taking place in their brain
What can a parent do if they see these warning signs?
We recommend that you talk with your child’s teachers to come up with a plan. You may ask that the teacher keep you up to date on how your child is doing, especially if your child seems unusually tired. You can have the teacher give your child the work they missed to work on at home.
What do I do if someone is bullying my child?
Be supportive, ask the child to describe how, when, where, and who did the bullying. Make sure they understand it is not their fault. Important note: Avoid suggesting that the child fight back.
Ask questions about their friends, taking care to pay attention to what could be considered bullying.
Discuss the problem with your child’s teacher.
Write down your concerns and contact the principal if the teacher cannot resolve them. Make sure you maintain a written record of your communication with the school.
Ask for a meeting of the Individualized Education Program or the Section 504 teams to discuss whether or not the school district is providing for your child’s needs. If your child needs supportive services, such as counseling, discuss this with the team. Work with the school to establish a prevention program that stops bullying and helps bullied children recover.
Make sure your child is not bullying other children. If he or she is, then your child may need a modified IEP.
Talk regularly with the school staff to make sure that the IEP has addressed this troubling behavior.
See the
link for more information.
Where can I look for more support if the school will not help me?
The U.S. Department of Education
Office for Civil Rights
Phone: (800)-421-3481
Web: http://www2.ed.gov/about/offices/list/ocr/ complaintintro.html
The U.S. Department of Education
Office of Special Education Programs
Phone: (202) 245-7468
Web: http://www.ed.gov/about/offices/list/osers/ osep/index.html
The U.S. Department of Justice
Civil Rights Division
Phone: 1-877-292-3804
Web: http://www.justice.gov/crt/complaint/#three
What about if my child is in daycare? How do I make sure they are safe?
You want to work with the staff and make sure they know what a seizure looks like and how to respond. The Americans with Disabilities Act does apply to private daycare centers. The daycare must provide a comparable service for your child with epilepsy.
What other ways can I help my child with epilepsy be succesful?
First, take time to meet with your child’s teacher before the beginning of each school year to discuss how epilepsy affects your child, what type of seizures he or she has, and how you would like the teacher to handle the seizures when they occur.
Since seizures are a common problem, many teachers will have had other students with epilepsy. If your child’s teacher is unfamiliar with seizures and would like information about them, contact your local Epilepsy Foundation. Videos, pamphlets and first aid presentations available from the Epilepsy Foundation have a basic message: that students with seizures belong in school and are in no way any kind of threat to other children.
With information, reassurance, and plenty of opportunities to ask questions, other children can also learn to take seizures in stride and continue to accept the child who has them. But gaining acceptance is not the only challenge for children with seizures.
Achievements
Highschool
How can I navigate not being able to drive in high school?
There are many positive ways you can ask for a ride. Listed below are some tips:
Ask nicely, and remember that they may not always be able to give you a ride.Discuss paying for gas with the driver; however, make sure you two understand how much you are willing to pay. Be ready when your driver arrives.If the driver is not getting the hint, it is ok to directly ask for a ride as long as you are polite.
What can I do about the notes I miss in class due to my epilepsy?
You can ask your friends for their notes. However, it would be best to clarify that you need the notes due to your epilepsy, not because you were not paying attention. Or you could ask your teachers if there is any way to get course notes.
Can I get involved in activities in high school?
Yes, it is good to get involved in high school because it will help you with your mood, making friends, and figuring out what you want to do with your life. You are not required to tell anyone about your epilepsy. However, if you will be traveling or there are long hours, it is good to let the host or some of your teammates know about your epilepsy. If you need a break, tell your coach and take the break. Important note: Remember to take your meds. Feel free to set an alarm to remind yourself.
Can I be kept out of activities just because of my epilepsy?
No organization is allowed to discriminate against you due to your epilepsy.
College
Who should I tell about my epilepsy?
It is a good idea to tell either your roommate or, if you have several roommates, then the ones you are closest to about your epilepsy. It would be best if You also told your RA.
What should I tell them?
You can tell them that you have epilepsy, give them a description of your seizures, and tell them how they can help. Or if you are comfortable and they are interested, you can go into greater detail or give them a brochure. If you are someone who gets auras or a distinct feeling before a seizure, you may want to make your roommates or your RA aware of it so that they can help you get to a safe place. You want to make sure that they know when to call your doctor, 911, or your parents. You will want to use positive reinforcement and emphasize that seizures do not make you more fragile than anyone else and are just a part of who you are. You should post first aid information on your dorm fridge. But, if you live alone, you should post the first aid instructions and a stopwatch on your door.
How do I get my prescriptions in college?
If you find that your school does not provide perception services, you can look into a prescription mailing service. You will want to ask your insurance if they prescribe any mail-in services and ask your doctor to write your prescriptions in three-month orders.
How does using the health center affect my insurance (school or parent)?
If you use the school’s health insurance, you will want to make sure that you know all the specifics. Often school health centers have limited hours over vacations and weekends. You may want to look into visiting a doctor outside of your university. However, due to the Patient Protection and Affordable Care Act of 2010, young adults can stay on their parent’s health insurance until they are 26, no matter their pre-existing condition.
Is there an office that can help me on campus?
Yes, federal law requires that every college or university given federal funding has to have someone who handles disability services. Often there is a disability office. But, unlike your high school, colleges are not required to make the same level of accommodations. But, they are required to make sure they are not discriminating against you. Therefore, you must make them aware of the adjustments you need. Make sure that you contact the disability office as soon as possible. If you need to know the steps, then you can look at your course guide or your handbook. You will be required to produce documentation of your disability, such as a doctor’s note.
Is there any way I can let the campus security know I need help?
Yes, students can activate blue lights on some campuses to let security know a pedestrian has encountered an unsafe situation. But, you can also activate them when you are about to have a seizure. You will want to contact security before you get to campus, letting them know about your seizures. You may also want to send a photo so they can recognize you. You will want to ask about late-night rides or rides in the winter.
Are there any scholarships for people with epilepsy?
Yes, this link lists quite a few.
