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 eCommunities social networking 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.
My son Derrick just graduated from high school but he has to return because of his disabilities. We found that reducing the stress of high school was more important than anything. So we made his school as stress-free as possible. We also set up all academic classes in his resource room. He took an art class and it turned out he was gifted in art. So we started adding art classes to each year then his school started adding art classes for the special needs kids. He has a one-on-one paraprofessional. He participated in the work program for the last 2 years, working in different jobs. Most recently he worked in a veterinary office. My son and I have found the best thing we did for him was to take the stress away from his high school years. Then he could make friends and have a high school life. — Donna
My 14-year-old daughter will be moving on to high school this year. We sat down and agreed the less stress for her the better. So we didn’t sign her up for any honors classes. I’ve already had a meeting with the high school principal and am looking forward to meeting the school nurse. Before the first day of school, all the teachers will know my daughter and me. I also have a PDF on seizure first aid I will e-mail to all of them. Then, I’ll hope for the best. — Sharon
Remember to contact your local Epilepsy Foundation affiliate. Most have trained staff and volunteers available to go to schools and do training and education programs for school nurses, teachers, bus drivers and in the class with students.
My son is going to middle school this year. Assemble a team—special education teacher, physical education teacher, regular teachers—and make sure you, as a parent, have a go-to person at the school who knows what is what. That is your contact person. At the age of 13, Kevin is being let go of (by mom) to fly somewhat solo. I have told the school that I will show up at different times to check in. Our public schools are doing OK, not great, but I will keep a very close eye. — Missy
For information about special education law, education law and advocacy for children with disabilities visit www.epilepsyfoundation.org/education and www.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, visit www.epilepsylegal.org. To download helpful publications on legal rights, visit www.epilepsyfoundation.org/legalinfo. Find educational consultants, psychologists, educational diagnosticians, health care providers, academic therapists, tutors, speech language therapists, occupational therapists, coaches, advocates and attorneys for children with disabilities at www.yellowpagesforkids.com.
This will be my daughter’s first year starting back to school with epilepsy. She was diagnosed last year after school had already started. Even though the nurse and staff are aware of her seizures, I am going to be sure to go over everything with them again and meet with her new teacher beforehand to make her aware of what warning signs she should be looking for. I will also make sure my daughter remembers that she must tell someone if she thinks she has a seizure coming on. — Aymee
Contact your local Epilepsy Foundation for a H.O.P.E. presentation, which can assist in training the school in seizure first aid and seizure recognition.
Provide the school with a brief description of your child’s seizures, a plan of action after the seizure (does your child need to nap afterwards, or go home or can she resume normal class activity). Can your child alert staff if a seizure is coming on or has occurred? Are there medication side effects that will interfere with school? Update and replace this sheet as needed to all appropriate staff.
Do not allow staff to treat seizures as less than they are, or more than they are (By this statement I mean that seizures can impact many areas of the child’s life, including learning.) Teachers need to be aware that medications can have a big effect on learning and a chronic disorder also causes additional stress on the student and siblings. However, this student has the right to the full academic environment with as little restrictions as possible.
Children with epilepsy should not be restricted any more than children with asthma, diabetes, cancer or other conditions. Have the doctor confirm through you if there are problems with school officials. — Ginny
Discovery Education and the Epilepsy Foundation have partnered again this year to continue their successful campaign Understanding Epilepsy. Providing educators access to classroom resources that help broaden understanding about seizure disorders, Understanding Epilepsy also offers useful training materials for school nurses and administrators that ensure all school personnel know how to respond when someone experiences a seizure. The campaign, which provided education to over 200,000 students last year, will be marketed again this year, with a new promotion of a middle school curriculum focused on stigma.