Real parents’ advice for sending your child back-to-school

We consulted the real experts in taking care of children with epilepsy—parents. They shared their stories and words of wisdom for making the transition back to school as easy as possible. The following edited excerpts were taken from the “Parents Helping Parents” discussion forum on our eCommunities social networking site and from our fans’ postings on our Facebook page.

I made some PowerPoint presentations last year and met with my son's teacher and classroom assistant to make sure that the seizure training they got from the nurse included everything I wanted them to know. I included some general information, too. I made a slide for each seizure type my son has; how it could present itself; and how each seizure type typically looked for my son. For example, a simple partial seizure can look a lot of ways, but for him people will most likely see an eye flutter or see a small staring spell. His teachers were not familiar with seizures, so they were very thankful to have me come and meet with them in an informal way and have someplace to refer back to.

Make sure you have a seizure plan that you and your child are comfortable with.  Also a seizure buddy is good if the child is old enough that knows what to do and is part of the seizure plan.  Remember the more prepared the less stress and the lower risk of seizure. --Emily Shepad

Being bullied can cause seizures. The stress of the situation can trigger one. --Felix Hernandez

Request a meeting with your child’s teacher, principal, school nurse and school counselor. During the meeting make sure they each have a list of your child’s medicines, seizure triggers, do's and don'ts when it comes to seizure first aid, doctors contact information and any limitations your child has due to their epilepsy. Also ask about the 504 rights. -Aymee Robinson

Educate all teachers and staff that have contact with your child! Present information regarding medication side effects and potential sub-clinical seizure activity because they could be seen as behavioral issues, which the child cannot control. An open door classroom policy is so helpful. I am a substitute teacher where my son attends school and a lot of times I have been very helpful in the classroom on days when he wasn’t his best. Not all schools have this policy but it is so helpful to the teachers and your child. -Jennifer Moore

My daughter had a seizure at school. After that, we asked the school nurse to educate the students about epilepsy so it wouldn't be so scary. -Patricia Ethridge Akins

Let the school know about the free H.O.P.E. (Helping Other People with Epilepsy) Mentor Program from yourEpilepsy Foundation affiliate. A mentor or an affiliate can go in and teach the staff or a class about seizure awareness in a very easy, friendly, non-threatening way.  Information is provided to the class, school and nurses. Provide a plan that is specific to your child (short and bulleted form is best). Give this to the teachers, nurse and administration staff, as well as the lunch room, with a picture of your child in a folder. Check in after the rush of the first week to make sure it has been read. If there are medication changes or other problems during the year, send an update (email or note and ask for a response so you know that it has been received). Key teachers who see your child should regularly send you information regarding changes in mood, work or physical signs (side effects of medications or possible seizures). Explain that you must notify the doctors therefore you need to know all these things. --Ginny Miller

I explained to my son that having epilepsy is like the color of your hair— some people have blond hair, some people have brown hair, some people have seizures and some people don't. That helped him understand that having epilepsy is not something to be embarrassed about. He has always been open to discussing his seizures and experiences with whoever asks. He knows that he is special and he likes to educate others. --Chandria Finley Pueblo

We had a hard time last year with teachers seeing some seizure activity. I sent a very detailed email and I think it helped, but I upped the ante for this year. I did the same thing as last year, described all the types of seizures but I also added videos for next year. I chose the best 'You Tube' videos (ones that look most like my child during a seizure!) and added them as an attachment! I'm really excited about this! I really hope it will help this year. --Anonymous

Don't over react and make an issue where there is no issue. The issue is only fear of the unknown which can be addressed with questions and answers. --Jackson Stormes

To me, the most important thing to remember is that you have to let your child be just a child in school. They need to be able to play and enjoy the things the other kids enjoy to an extent. If your doctor has restrictions, make sure the school knows. My son's best memories have been because his 1st grade teacher chose to teach all the kids how to care about the other kids. She wanted them to be buddies to each other, care when another had a problem and be part of the solution. My son has been lucky enough to have these friends all through school. They are still friends as adults. Make sure the school makes a seizure plan; it’s usually called a Health Plan. Make sure all staff knows the situation. This will include the bus drivers and custodians. It’s really important. --Donna Roberts

I like to pass out the great posters from the Epilepsy Foundation that show what different seizures look like. I have one hanging in the clinic and one is given to the P.E. and classroom teachers. I meet with his teachers before school to go over the seizure action plan and to answer their questions. One thing I learned from this year was to discuss with the principal the use of flash photography during grade level and class performances. Now they take photos before the show and after the show but not during. --Cady McFadden Coe

We’re not parents but we have great advice!

As an art teacher with epilepsy it's important to me to know the special needs my kiddos may have. I'd provide the school with a "What to do During a Seizure” flyer. I gave one to my fellow teachers due to my epilepsy and the teachers were grateful for the information, many of them even posted it in their classroom next to their "What to do if Someone is Choking” poster. --Jill Linnell

Have no fear of telling your close friends what epilepsy is so that group of friends know what's going in your personal life. Close friendships make the school year worthwhile. --Lydia Jones

Take a deep breath and relax, no matter how bad you think it is right now. One day your classmates may look back and thank you for being strong. --Meghan Johnson

For more information, visit Preparing for a New School Year and for more resources, visit the Epilepsy Foundation online store. Also, view the materials for educators in the online store.

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 here or can be obtained through your local affiliate. The forms include:

Questionnaire for Parents
This form is to be completed by the students parent(s) to assist the 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 six months or when changes occur.

Seizure Information Sheet
This form was designed to provide classroom teachers with basic information about a student’s seizure and medication. It should be signed by the school nurse and given to 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, click here.

IDEA

The Individuals with Disabilities Education Act (IDEA), formerly known as the Education for All Handicapped Children Act (P.L. 92-142), guarantees “that all children with disabilities have available to them a free appropriate public education.” 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, click here.

Section 504 and Your Child’s Right to Be Free from Discrimination

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, click here.

Individualized Education Plan (IEP)

Every child in public school who receives special education and related services must have an IEP that directs the students’ goals and objectives for the year. Each IEP must be designed for one student and must be a truly individualized document. The IEP creates an opportunity for parents, teachers, 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 evaluate 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.