Encore: Back to school for parents of children with epilepsy

Parents of children with special needs often look upon this time of year with trepidation and stress. Parents, often worn out from the emotional roller coaster of dealing with their child’s epilepsy on a daily basis, can be further challenged when they have to deal with the school system. Each day can be a frustrating battle.

For those parents of children who are going to special education classes for the first time or who are going to new teachers, the following suggestions may make your child’s school life a more enjoyable experience, thereby easing some parental pressure.

Suggestions for ParentsExpand Suggestions for Parents Section

Get a medical identification bracelet or necklace if your son or daughter has been diagnosed with epilepsy. Ensure that s/he wears it at all times. The information that medical personnel can obtain by calling the number on the back of it is invaluable in case of an emergency.

Make a point of seeking out and meeting with your child’s teachers (s/he will probably have more than one). Do this as soon as possible. Don’t assume that the previous year’s teacher has relayed your child’s medical condition to the new teacher or that the new teacher has read your child’s Ontario School Record (OSR).

Most teachers are swamped during the first few weeks of school. Take it upon yourself to inform the teacher(s) and the principal of your child’s seizure disorder. When you approach each instructor and care giver (include bus drivers, teaching assistants, lunch room supervisors, etc.) who has contact with your child, communicate the following:

1. What is epilepsy? Keep it simple.

2. Describe your child’s seizures. What do they look like? Be specific. If your son or daughter experiences more than one kind of seizure, teachers need to recognize them.

3. First aid for seizures. Make it clear that it is not appropriate to send a student home every time s/he experiences a seizure. At times, s/he may need to rest for a few minutes before resuming lessons. At other times, s/he may need to lie down and have a short nap or even sleep for several hours.

4. Steps to take in case of an emergency (such as a prolonged seizure which continues for more than five to 10 minutes). It will help if you leave a brief, one-page medical record with the school secretary, principal or teacher in the event an ambulance is required. It can be given to the ambulance attendant in your absence.

Expand Checklist for your child's information sheet SectionChecklist for your child's information sheet

Be sure to include:

1. the types of seizures that your son or daughter experiences

2. the names and phone numbers of your family doctor and neurologist
the names and dosages of medications currently being administered

3. any allergies or other conditions

4. what, if any, particular protocol of medications in the case of a prolonged seizure should be followed

5. a copy of a letter from your neurologist if you feel it’s necessary

Remember, this information sheet must be kept up-to-date. Discuss and name the various medications that your son or daughter is currently being administered. Ask your pharmacist, neurologist or local epilepsy agency to provide you with information on the side effects of each drug (the Epilepsy Ontario website can be a good source). The side effects can potentially have a tremendous impact on your child’s performance and behaviour at school.

5. Try to “in-service” the school staff (have someone come to present and discuss information about epilepsy) at a time that is convenient for them. Seek assistance from your local epilepsy agency. They will be able to provide you with literature that you can give out, as well as connect you with someone who would be willing to speak on your behalf if you are reluctant to do it yourself.

In the event that your child’s teacher is away, have a plan of action to offer the principal.

  • How will the supply teacher be informed?
  • Is the medical condition of your child indicated in the teacher’s day book?
  • Is there some information (a seizure first aid poster) available for the supply teacher? Perhaps your child can relay the information.

If your son or daughter is in a regular classroom, consider having the whole class “in-serviced” about epilepsy, especially if your child’s seizures are fairly regular and/or not controlled.

Why disclose your child's epilepsy?Expand Why disclose your child's epilepsy? Section

Do you remember the first time you witnessed a seizure? Imagine the emotional upheaval of a young child witnessing a classmate having a seizure. They need to understand why their classmate is having seizures and how they can help. They need to be assured that they cannot “catch” epilepsy by associating with your son or daughter.

The support and understanding of peers is vital to the social and emotional development of your child. Again, your local epilepsy agency can assist you with materials appropriate for young children, teens, etc. An open line of communication is essential between parents and educators. Both aim to help your special child reach his/her full academic, social and emotional potential.

Have a good year!

Writer: Jyoti Duggal Sanwalka
Published: Fall 2007 in
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