The Stigma of Epilepsy

I found that when I informed the school that my daughter was Dx with epilepsy it was not a big deal. The one who had to be informed were the principle, school nurse, teacher and a few other adults the whole point of telling them was to have a plan in play if one where to happen at school. My plan is call 911 then me. It helps everyone no what to do the school was not fearful at all and none of my childs classmates even know. I feel it is better to be prepared than for everyone to be suprised and not know what to do. Also if your child is on medications you would want the school nurse to know and it be on record so if anything did happen at school (not that it will) they have the proper information to give those that are trying to help your child. There is also a privacy act reguarding schools that personal information is not shared with just anyone so you really dont have to worry about everyone knowing.

The stigma associated with epilepsy can be difficult to deal with. But where I live there is a local epilepsy program coordinator who goes around to the elementary & secondary schools to educate students about epilepsy at the request of the parents. If the seizures are nocturnal or only occur at home and side effects are not clearly apparent, then the epilepsy issue should be information that is given in confidence. There is no need to let people who don't need to know that your child has epilepsy. So goes the saying, "It isn't the disability that is the problem; it is the handicap that society creates around the disability which is the problem."

My daughter is elementary school and I have found everyone at school to be wonderful in helping us and our daughter as we work to get her seizures under control. I believe being up front with the principal, nurse, and all the teachers is the best thing to do for you and your child. I have educated them on what to do if she should have a seizure (do not call 911), provided them with information I obtained from the Epilepsy Foundation and answered any questions they have had regarding what is best to help my daughter. Educating those who your child is in contact with will help take away the stigma and make them more comfortable with the situation. Quite a few of her good friends are aware she has seizures and what to do if they notice her acting different (tell the teacher). The Epilepsy Foundation has videos you can order that can be shown to teachers and children that explains seizures. I believe by having an open and optimistic relationship with the school will only make you and your daughter more comfortable. I would also suggest getting involved in the school, whether by volunteering with the PTA or being a parent classroom volunteer and getting to know the principal, office staff, teachers etc. will be very beneficial to you. My experience has been very positive. People are afaid of what they don't understand and by educating those around your daughter you will give them the knowledge and confidence to help her. Go in with a positive and upbeat attitude (I know it is hard at times)and hopefully you will be met with the same from those at the school. My daughter has mainly complex partial seizures (1 tonic/clonic)and we have recently had to add another med. She was diagnosed at age 8 (a year and a half ago).