School and Education
During the diagnosis and treatment of a brain tumor, your child may be asking, “When can I go back to school?” Going back to school after months of treatment can be a cause for celebration. Children and young adults gain a sense of accomplishment and peer support from school, and long absences and changes in learning abilities can interrupt this positive interaction.
In addition, returning to school is a process that needs care, attention and support by you as a parent, and also by the child’s teachers, school social worker and principal. Changes in appearance and cognitive abilities can affect self-esteem, create depression and anxiety and lead to frustration. So, although it’s important to return to school, it’s also critical to be aware of what your child may experience and ways you can help.
Whether your child loves school or not, school is a symbol of a “normal” life. If possible, keep connected to classmates and favorite teachers or instructors.
- Encourage calls, visits, texts and emails from classmates.
- Arrange a video chat with the child’s class at school, or with individual friends.
- If possible, try to keep them engaged with school during treatment. Work with the school to find activities and assignments that fit into your child’s treatment schedule and abilities.
- Keep teachers updated about your child’s condition. However, make sure to talk to your child first to learn what he or she may (or may not) be comfortable revealing about this personal situation.
- Ask your healthcare team about possible dates when your child can return to school, even for partial days. Children’s hospitals often have an education coordinator or social worker to help make these determinations.
- Some children continue to attend school while they are in treatment. However, they may experience teasing or awkward relationships with peers during this time. Open communication with the school, classmates and teachers can help your child and his or her supporters deal with these challenges.
Before returning to school
Once your child is ready to return to school or college full-time, advance preparation is needed. The brain tumor and subsequent treatments may have altered your childs’ learning capabilities, behavior, strength, energy levels, coordination, speech, hearing or eyesight. It may be the first time your school has worked with a family in your specific situation. Communicating with the school early and often during treatment will help smooth the way for a good transition. In addition, you may find that your child is eligible for additional services to improve his or her educational experience.
Special education services and individualized education plans (IEPs)
The Individuals with Disabilities Education Act (IDEA) and The Rehabilitation Act of 1973 – Section 504 ensures that those with physical or cognitive disabilities must be offered accommodations to help them achieve their educational potential.
Under the IDEA, your child is entitled to an evaluation which will result in an individualized education plan, or IEP. The IEP sets specific goals for your child’s education and outlines the accommodations and services that your child will receive. Once your child has an IEP, the school is required to provide the accommodations and referrals to such services as occupational therapy, speech therapy or counseling. Other accommodations may include:
- Use of a computer or audiobooks
- Written class notes
- Weekly assignments given ahead of time
- Assistance with organization
- Use of a calculator
- Extended testing time
The IEP can be changed at any time during the school year, and typically the school will hold a yearly meeting to update the plan with all involved. If any changes are made to the IEP, or any meetings are held regarding the IEP, parents must be notified in writing.
Although your child’s school will offer its own testing to determine whether students qualify for special services, it is important to supplement that evaluation that is specific to children who have survived brain tumors. Neuropsychological testing helps assess processing speed, attention, visual motor integration, planning and organizing skills, visual and verbal memory, reading comprehension and math calculation and applied abilities.
Your child’s impairments may be subtle and may continue to change years later. Neuropsychological testing will help assess needs and identify the necessary accommodations for a student to succeed in a classroom environment.
The results from a neuropsychological evaluation should be included in your child’s overall records and the recommendations should be integrated into your child’s IEP.
Whether or not your child needs special accommodations at school, most children want to be treated as normally as possible. Many hospitals provide the services of a hospital-school liaison, a medical professional who can help ease the transition to school and provide ongoing support for your child’s physical and emotional wellbeing.
After meeting with you and your family, the hospital-school liaison helps determine what the child needs to return to school. Your liaison will also meet with you and your child’s educational team to educate them about your child’s condition and needs, and discuss any concerns you or the team may have. In this meeting, it also helps to talk about medical issues such as:
- Medications your child needs to take during school and how and when to administer them
- Medical devices such as a port, central line, or shunt, and warning signs of potential problems
- The potential for seizures and how to handle them
- Emergency contact procedure (what is an emergency, who to call first, contact information, etc.)
- Potential social and behavioral issues
- Physical disabilities such as hearing loss, motor coordination, etc.
Educate teachers and peers
People at the school who are unfamiliar or unhelpful about your child’s condition may cause your child undue stress. Many people have misperceptions about brain tumors, and may not know what to expect when your child returns to school. Your hospital-school liaison, you, or a knowledgeable family representative can help prepare classmates and teachers by providing them with information about brain tumors, answering questions, and addressing concerns.
Ask your child if and how much he or she wants to be involved in the presentation. Although your child may not want to present information, it is helpful to listen and learn what, with whom and if your child wants to share. Visit Communicating with Children for specific words to use and other ideas.
Monitor and advocate
Even with an IEP or other education plans in place, everything may not go as planned. A recent study found that less than 50 percent of recommendations from neuropsychological evaluations were implemented in the school setting, which underscores the importance of parents advocating for their children’s interests.
As your child makes the transition back to school, you might consider planning regular meetings with your child’s teacher or counselor to see how things are going. Ask about behavior, signs of fatigue, excessive frustration or depression. Check in with your child frequently and help address his or her concerns. Be aware of changes in your child’s physical, emotional or cognitive abilities and be prepared to request updated accommodations at school.
For additional support, try these resources:
- ABTA CareLine at 800-886-ABTA (2282), or ABTAcares@abta.org
- ABTA’s social media network
- Find a support group in your area
- Read more about Educating Children and Teenagers
1 Quillen J, et al. “Parental Follow-Through of Neuropsychological Recommendations for Childhood-Cancer Survivors,” Journal of Pediatric Oncology Nursing September. Oct 2011; 28(5) 306-310. Abstract: http://jpo.sagepub.com/content/28/5/306.short accessed January 22, 2015.