It is up to you to make sure your child receives the education he needs and deserves. Advocacy is the process of seeking what you need to help your child obtain the services to which he is entitled, in order to facilitate a successful school experience. This process can involve discussion, letter-writing, and meetings at the local
level with school staff and other relevant persons involved with your child’s care. At the broader level, advocacy may include soliciting support from the school board, the special education advisory committee, the ministry of education, or even your member of parliament.
School and parent partnerships
Children with epilepsy must sometimes cope with more than the usual challenges associated with school. They may struggle with learning difficulties, behaviour problems, or social and emotional difficulties.
In order to set up a positive classroom environment and work toward making school as rewarding as possible for your child, it is important to promote a partnership between your family and key individuals from the school, school board, and health care team. Try to problem-solve issues as they arise. Keep lines of communication open. It is important to develop an ongoing relationship with your child’s teacher to monitor
his academic progress as well as his social relationships with peers.
Before you meet with the school
Even before you meet with your child’s teacher and possibly the school administration, there are several things you can do in preparation for your child starting school or returning to school after a diagnosis of epilepsy or specific treatment.
- Understand your child’s epilepsy and its potential impact on learning, behaviour, and emotional and social adjustment. Each child’s experience is different, depending on whether there is a brain abnormality, the type and frequency of seizures, and the type of anti-epileptic medication. Any of these factors can affect your child’s learning. By understanding your child’s needs, you can advocate for the appropriate type of help from the school system.
- Seek advice from people with experience. Your child’s treatment team, parent support groups, and other parents may all have information to help you. Consider support groups for children with epilepsy or other chronic conditions. They can provide ideas that could help guide you through the education system, even if their child’s issues are different than yours.
- Know your child’s rights. Every child has a right to an education. Each province or state has different laws about services that must be provided for a child who has special needs. Again, talk to others with experience. They can give you an idea of what you can legally expect in terms of services such as tutors or special education.
- Be prepared to work to get what your child needs. It can be difficult at times to budge the system in order for it to be responsive to your child’s educational needs. This "work" may be as simple as asking the teacher to give your child extra time on a test, or it may involve organizing a formal psycho-educational or neuropsychological assessment for your child. In some provinces or states, this assessment is required before your child is eligible to receive any special educational services.
- Obtain a letter from your child’s neurologist or another member of the epilepsy care team. Make copies for the school principal, your child’s teacher(s), and the school nurse. If your child has had a neuropsychological assessment, copies of this may also be useful to share.
Explain your child and her condition to the school staff
If your child has just been diagnosed with epilepsy, or if she is starting a new year of school, contact your child’s teacher(s) and principal before your child goes back to school. Some hospitals have a clinic nurse or social worker who can speak or meet with school staff. If not, you can set up a meeting yourself. A telephone call, teleconference, or e-mail message is also helpful if you cannot meet in person.
It may also be beneficial to have other experts attend the meeting. For example, you could include your child’s teacher from the year before, your child’s neuropsychologist or other member of the epilepsy care team, or a special education or resource teacher from the school board as needed. In some cases, it may not be possible for epilepsy team members, such as the clinic nurse or neuropsychologist, to physically attend a meeting. However, telehealth conferences or conference calls provide another option for input from these team members.
If possible, find out if there are any other children in the school with epilepsy and any special preparations or plans made for them. You may with to talk with their parents and form a support and advocacy group.
Describe your child’s seizures and treatment. Explain how they might affect school work, attendance, physical access, physical activities, and safety issues. In the areas that are affected, your child will likely need support.
If your child will need to take medication during the school day, discuss this with the school nurse or the person who will be responsible for giving the medication. Make sure that they are aware of the medication and dosage. Find out how the school would like you to deliver the medication. Many schools have specific procedures for storing and administering medication. Be sure that you also agree on a procedure for communicating any medication changes to the school.
Explain what to do in case of a seizure. Also provide the school (teacher, school nurse, or school administrator) with a protocol listing what to do in case of a seizure. This protocol should be kept handy for easy reference.
Inform the school when they should notify you or call for emergency help if there is a problem. This information is usually part of the protocol. The school may also have its own medical protocol, so you may need to talk about how the two protocols can work together to keep your child safe.
Discuss whether your child may need an Individual Education Plan (IEP). This is a special plan suited to your child’s specific learning needs.
Ask the school staff to maintain regular contact in order for you to understand how your child is doing at school. Discuss the details of what "regular contact" will look like with your child’s teacher.
If you have other children at the same school, it may make sense to talk to their teachers about your family situation (that is, that you have a child with epilepsy) if you think this may be affecting your other children and their school work.
Help school personnel to understand that flexibility is key in working with children with epilepsy because the nature of epilepsy is that it changes over time.
Maintain open communication while your child is at school
It is important to develop good relationships with your child’s teacher, the principal, and office staff at the school. You will need to work together, especially when your child is facing problems. Also, they can tell you how your child is doing at school on a day-to-day basis.
Inform the teacher and school if there are changes in your child’s condition that they should know about. This may include changes in medication or seizure frequency or any other pertinent issues she is experiencing.
Meet the teacher on a regular basis (the frequency of contact must be agreed upon with the teacher and the school) to discuss progress, problems and solutions. At a minimum, try to meet at the beginning, middle, and end of the school year, as well as at the school’s regularly scheduled parent-teacher evenings. Ask the teacher if she is willing to use a "communication book" between meetings. This book can travel back and forth in your child’s backpack so you and the teacher can keep each other informed about any changes and progress at school and at home.
Discuss any issues or concerns that arise immediately and work together with the school to find the best possible solution. If your child is falling behind in school, make arrangements early on for evaluation, testing, and extra help (such as tutoring) as necessary.
Inform the teacher and school beforehand if your child may be absent from school due to her seizures or treatment. Work with them to find ways your child can keep up with her school work. When possible, organize work for your child to complete while she is away from school.
Be aware that some schools may try to direct your older child with epilepsy into applied courses instead of the academic stream. This "streaming" happens around Grade 9. This will have a significant effect on your child's future (for instance, preparing her for trade school instead of college or university) and the type of work she can pursue. Seek out the help of a guidance counsellor early on to work on appropriate school placement that matches your and your child’s expectations around future academic and career choices. Arrange for extra tutoring and help as necessary.