Living with Epilepsy
Direct from the Source: Advise on Back to School from Parents of Kids with Epilepsy
For a complete list of Local Parent Resourses - Scroll all the way down
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 Nationals 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, local parents, and resources we've found the most helpful from the Denver office.
Seizure Action Plans and Diastat:
Give the school nurse a current Seizure Action Plan for your child. Make sure every school staff member who has contact with your child during the day understands the type(s) of seizures your child experiences, is trained in seizure first aid (and the application of diastat if your child requires this intervention), and what to do with your child when the seizure subsides.
Give the school nurse a red Diastat blanket to keep in the appropriate location to be easily accessed if needed. This provides privacy for your child when Diastat is administered and there is no question as to the purpose of the blanket or who it is for.
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.
You can also contact The Colorado Department of Education - Exceptional Student Services Unit
Phone: 303.866.6694, Website: cde.state.co.us/cdesped/index.asp
In Class Seizure Education
Consider talking to your child’s classmates about your child’s condition. The Epilepsy Foundation of Colorado can provide books, videos or even do the presentation for you if you don’t want to do it yourself. The more open you or your child is to discussing their seizure disorder, the more accepting others will be. Be sure to take your child's lead on 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. The Epilepsy Foundation can tailor a class to be general seizure 101, we can educate the entire class without indicating that any child actually has epilepsy or not.
Contact the Epilepsy Foundation of Colorado to talk about seizure presentations in the classroom, 303.377.9774, 888.378.9779
Know your special education laws: A great resource for parents is wrightslaw.com, which covers almost everything imaginable.
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.
Be sure your child's IEP is updated for the currents school year and meets your child's needs and accomodations
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 or help creating an IEP contact: PEAK Parent Center:
Phone: 1.800.284.0251, Website: peakparent.org