Every parent of a child with epilepsy knows that it’s hard enough to keep their child safe at home, but a whole new set of challenges presents itself when the child goes off to school. On our popular new eCommunities site, parents exchange advice and tips on how to make the transition back to school go as smoothly as possible. We decided to turn to the real experts— parents of children with epilepsy—and ask what they do to prepare for back to school. The following are edited excerpts from the eCommunities’ “Parents Helping Parents” forum.

School Forms to Aid in Seizure Management The Epilepsy Foundation offers several sample forms that can aid in educational planning for students with epilepsy. The free boilerplate forms can be adapted to meet individual and institutional needs. Copies are available for downloading on the Epilepsy Foundation Web site or can be obtained through your local affiliate. The forms include: Questionnaire for Parents This form is to be completed by the student’s parent(s) to assist school personnel in recognizing a student’s seizure(s) and responding appropriately. It includes space for parents to provide details about the student’s seizure patterns, medications and how they are to be administered, precautions that should be taken during physical education and recess, and other issues. The parents’ questionnaire should be updated annually or when any changes occur. Student Interview Form A student can provide valuable information about his or her epilepsy that is helpful in health management planning. This form is to be completed by the school nurse through an interview with the student. It should be updated every 6 months or when changes occur. Seizure Information Sheet This form was designed to provide classroom teachers with basic information about a student’s seizures and medication. It should be signed by the school nurse and given to the teachers at the beginning of a school year, when a diagnosis is made, or when changes occur. Teacher’s Anecdotal Record This form is to be completed by the student’s teacher or other school personnel when reporting a seizure(s) and/or medication side effects. It includes space for teachers to record a description of the seizure or behavior observed, what behavior immediately preceded and followed the seizure, what procedures were followed by the teacher/ observer, and other details. To download these forms, visit: www.epilepsyfoundation.org/living/children/ education/schoolforms.cfm.

I was an experienced 6th grade teacher for many years and I did have a few students who suffered seizures. The most important thing you can do at the beginning of the school year is alert the county or city superintendent of your child’s seizures. Also—very important—alert your child’s school nurse, principal, vice principal, guidance counselor and teachers—preferably when they’re all in the same room— about what to do if your child has a seizure. As a teacher who was laughed at by her 8th grade students during a seizure, I can relate to the feelings a child with epilepsy may have.
Loretta, Walterboro, S.C.

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Depending on your child’s seizure type and control, you might want to have an aide assigned to your child at all times— ensuring they get safely into the building each morning after they leave the car or bus and stay safe throughout the day in the classroom and the bathroom. Make sure one of the two people who administer Diastat [an emergency treatment for prolonged and clustered seizures] is always in the building. Field trips also need to be coordinated for coverage. It’s also important for teachers and staff to know that a child’s learning and behavior may vary due to medication effects.
Liz, Glencoe, Ill.

The Individuals with Disabilities Education Act (IDEA), formerly known as the Education for All Handicapped Children Act (P.L. 92-142), guarantees children with disabilities a “free, appropriate public education in the least restrictive setting.” This means that local school districts must develop and pay for an educational program that is tailored to the individual needs of the child with a disability. In some situations, the local school district may even be legally required to pay tuition at a private school or the cost of an outside provider if it is unable to provide the needed services in its own schools. For more information, visit epilepsyfoundation.org.

Take your child’s lead when it comes to whether or not to tell the class about their seizures. Some parents are really big on advocacy, so it might be our inclination to want to prepare a big presentation, but our kids might be inwardly cringing at the very idea of that. We need to talk to them and be sure they are comfortable with whatever approach we take. Know your special education laws: A great resource for parents is wrightslaw.com, which covers almost everything imaginable. Of particular interest is IDEA, which covers IEPs (Individualized Education Programs), and Section 504. Transitioning from summer to back to school gets so crazy. Stress over starting school again has triggered breakthrough seizures with both my kids. Whether it’s the change in schedule, less sleep, being nervous—I am sure my kids aren’t the only ones. I think most parents try to get their kids back into the routine of going to bed earlier and waking up earlier well in advance of school starting. I think this is even more important for our kids with epilepsy.
Harriet, Oxford, Conn.

Section 504 prohibits schools that receive federal funding from discriminating against a child because of disability in academic and nonacademic activities, such as school field trips and extracurricular activities. The law also requires schools to provide a child who is otherwise qualified to participate in the particular activity a reasonable accommodation. A reasonable accommodation is a modification in a program or policy, or an auxiliary aid that enables an individual with a disability to participate in a program. Depending upon the child’s needs and the activity involved, a reasonable accommodation may include administering medicine at a particular time in accordance with a doctor’s directions, waiving a requirement that all children be able to swim in order to attend a general recreational program, or allowing the child to attend the program on a reduced schedule. For more information, visit epilepsyfoundation.org.

Every child with epilepsy does not need an IEP. However, learning disabilities are common among children with epilepsy, so many do have IEPs. My son has ADHD (Attention Deficit Hyperactivity Disorder) and hand/eye coordination issues and gets extra help for these, as written in his IEP. He also gets testing accommodations, such as more time. Accommodations and services should be whatever is medically necessary for the child. The school staff should do what the neurologist says is necessary, however they do not always comply. The teacher and the school nurse need to know that a child has epilepsy. How they respond depends on the individuals involved. Unfortunately, your child may be stigmatized. This is a worst-case scenario, but we have dealt with it and survived. A change of schools turned out to be the best option. Overall most teachers, administrators and kids handle the information well.
Elizabeth, New York, N.Y.

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My advice is to educate yourself and be mindful of discrimination. We had an issue regarding exclusion due to Diastat. And, while I did move through the chain of command, I also contacted my local Human Rights Commission. Sometimes, you have to let the school know that not only do you know the law, but you are prepared to take action to enforce it. I have always hated confrontation, but I will do what it takes!
Laura, Springfield, VT

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Don’t be afraid to fight for your child and research, research, research!

My son has always been an intelligent, articulate, straight-A student. But his epilepsy has caused him to have some learning issues. After we had a neuropsychological exam last summer, one of the recommendations was to try to get him an IEP right away because he is probably going to have more problems the older he gets. It is much more difficult to get an IEP approved for

a good student like him if you wait until high school, even though that is when he will most likely need it the most. When approaching the schools, know what you are talking about, provide written information about your child’s issues, assume that no one at the school knows anything about your child’s condition and use it as a chance to educate them. Teachers are busy and have a lot of students, if they forget something you have told them, keep in mind that they are only human and are dealing with a lot of students and parents. They may need gentle reminders. Remember to put everything in writing!
Lynn, Dublin, Ohio

Each public school child who receives special education and related services must have an Individualized Education Program (IEP). Each IEP must be designed for one student and must be a truly individualized document. The IEP creates an opportunity for teachers, parents, school administrators, related services personnel, and students (when appropriate) to work together to improve educational results for children with disabilities. The IEP is the cornerstone of a quality education for each child with a disability. To create an effective IEP, parents, teachers, other school staff—and often the student—must come together to look closely at the student’s unique needs. These individuals pool knowledge, experience and commitment to design an educational program that will help the student be involved in, and progress in, the general curriculum. The IEP guides the delivery of special education supports and services for the student with a disability. Without a doubt, writing— and implementing—an effective IEP requires teamwork. For more information, visit the U.S. Department of Education’s Web site at ed.gov. Photos: iStockphoto: Kate Monakhova, Kim Gunkel

An IEP has helped our daughter a lot. We got it 4 years ago and we are glad we did. It takes the stress out of tests, homework and projects for our daughter, which is fantastic because stress triggers her seizures. The school district office bends over backward to accommodate our needs because of the IEP. There are also some rules that were set by the district that the school follows, such as a bathroom buddy and, if she doesn’t arrive in class within the first 5 minutes, the teacher must contact the office and tell them so they can page our daughter or send someone to look for her. The district also outlines seizure protocol with your input. You can tell them when to give emergency medicine and when to call 911 if they can’t reach you. Important steps like these can put your mind at ease. School liaisons are the best. They help your child transition from one grade to another. They come to your child’s school (after the principal gives permission) armed with slides and tons of information and do presentations in all of your child’s classrooms. They help the kids learn compassion and understanding toward your child. They also give tips to the kids on how to handle a seizure, if they are around when your child is having one. They have a Q&A session after each presentation to answer all the questions the kids might have. The kids get to take home a letter to their parents explaining what they learned that day from the presentation so that the parents are also aware of this child in school and they might be able to discuss the issue some more at home with their kids. Our school liaison’s visit has given so much confidence to our daughter. She is totally stress-free about going to school and is actually having tons of carefree fun, which is the way it should be. Keep in mind, getting a school liaison depends on your child and whether or not they are comfortable telling the other kids in school about their seizures. I found that once we explained to our daughter about how it might help the other kids understand what she goes through, she was OK with it. She sees a difference in the kids’ attitudes toward her seizures and she is a lot more comfortable running around the school grounds knowing that it’s OK if she has a seizure because she is surrounded by people who do understand and who genuinely care. Our neuro-oncologist put us in touch with the school liaison at our hospital. Talk to your doctor about this and I’m sure they can give you some names.
Devi, San Jose, Ca.

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My daughter frequently has seizures on the bus. The school district worked in conjunction with the bus company to make sure the driver and the aide on the bus are trained to know what to do in case of a seizure. They are educated and we have a protocol in place that is acted upon in the event of a seizure. Any substitute drivers or aides are also trained. My daughter is always the last one to be picked up and the first one off, minimizing the amount of time she spends on the bus and therefore minimizing her risk.
Nancy, Edwardsville, Ill.

For information about special education law, education law and advocacy for children with disabilities, visit epilepsyfoundation.org and wrightslaw.com. The Epilepsy Foundation’s Jeanne A. Carpenter Epilepsy Legal Defense Fund has helped many parents with legal issues surrounding their children and schools. For more information, and to download helpful publications on legal rights, visit epilepsyfoundation.org/epilepsylegal. If your child was recently diagnosed, or you have specific concerns about medications or getting support at school, visit our new parent Web site, www.epilepsyandmychild.org.