Brain tumour diagnosis and advocating for your child in school

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Detailed information concerning how to advocate for your child as soon as she in back in school, and balancing treatment with education.

Key points

  • Talk to your child's treatment team about how schooling can fit in with their treatment plan.
  • Transitioning back into school can be difficult for your child, especially if they are still not feeling well from treatment.
  • When your child returns to school you will need to work with their teacher to get the best education for your child.

A huge part of every child’s life is going to school. Along with learning the basics of reading, writing, and math, children learn how to communicate and get along with other children at school.

It is important to talk to your child’s treatment team about how their schooling can fit in with treatment. For longer stays in the hospital, special teachers may be available at the hospital. Teachers will often send homework, or perhaps a classmate or sibling could visit in the hospital with assignments. During treatment, some children are able to attend school almost full-time, others manage to attend part-time. If your child needs to stay home for a certain amount of time, home educational assistance may be available for several hours a week. This would be determined by your child's school.

If your child has been out of school for some time, going back is a good way to get back into a regular routine and reconnect with friends. However, the change can be hard. Plan the transition back to school. Your child may have mixed feelings about going back to school. They may have fallen behind in their schoolwork. They may not be feeling well because of the tumour or the treatment. Most schools do not have experience in dealing with children with brain tumours because they are so rare.

For these reasons, you may need to take a greater role in your child’s schooling from now on and become an advocate for your child.

Your goal is to work with your child’s teacher to get the best education for your child. These ideas may help you.

  • Seek help 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 cancer, special needs, or brain injuries. 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 is ill or disabled. 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.
  • Develop good relations with your child’s teacher, principal, and office staff at the school. You might need to work together at some point if your child is facing problems. Keep in touch if there are changes in your child’s condition that they should know about. Also, they can tell you how your child is doing at school on a day-to-day basis.
  • Understand your child’s situation. Each child’s experience is different depending on the type of tumour, its location, and the treatment. For example, for chemotherapy or radiation therapy, your child may need to be away from class often. Also, radiation therapy and some types of chemotherapy may lead to learning problems in the future. Your child may also have vision or movement problems that affect their ability to read the blackboard or join in certain class activities. By knowing what your child needs, you can ask for the right type of help.
  • Be prepared to work to get what your child needs. This “work” may be as simple as asking the teacher to give your child extra time on a test. Or it may involve getting a formal neuropsychological assessment, psychoeducational assessment, physical therapy assessment, occupational therapy assessment or other types of assessment on your child. In some provinces or states, assessment is needed before your child can get any special educational services and is often part of the treatment plan.
Last updated: July 10th 2009