During the diagnosis and treatment of a brain tumour, 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.
Although at times dealing with school-related issues can seem like just one more “to do” on your growing list, opening an early dialogue with the educators in your child’s life will help ensure your child’s educational success both during and after treatment.
The first step is alerting the school about your child’s diagnosis and treatment plan, the expected duration of the treatment, and the extent to which he or she will be absent. Notifying the principal, your child’s teacher(s), and the school counselor quickly will not only keep them informed of expected absences, it will also enable them to work with you to ensure that your child does not fall behind academically during treatment and keep the school informed about potential limitations that treatment places on their ability to complete certain types of activities or work while in school.
Whether your child loves school or not, school is a symbol of a “normal” life. If possible, try to make sure they stay connected to classmates and favourite teachers.
- Encourage calls, visits, texts and emails from their classmates.
- If possible, try to 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 full-time, advance preparation is needed.
The brain tumour and subsequent treatments may have altered your child’s learning capabilities, behaviour, 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 the school could help your child with additional services to improve his or her educational experience such as :
- Use of a calculator, computer or audiobooks
- Written class notes
- Weekly assignments given ahead of time
- Assistance with organisation
- Extended testing time
Neuropsychological testing helps assess processing speed, attention, visual motor integration, planning and organising 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 well-being – check with your child’s oncology team whether they can offer support in this regard.
It is good to make use of this type of service if at all possible, as it can help determine what your child needs to return to school. If possible, ask the liaison to meet with you and your child’s teacher(s) to educate them about your child’s condition and needs, and discuss any concerns you or the team may have.
In this meeting, it is important to discuss 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 behavioural 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 tumours, 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 tumours, answering questions, and addressing concerns.
Ask your child if and how much he or she wants to be involved in the presentation. Although they may not want to present information, it is helpful to listen and learn what, with whom and if your child wants to share.
Monitor and Advocate
Even with everything in place, everything may not go as planned. A recent study found that less than 50% 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, it may be a good idea to plan regular meetings with his/her teacher or counselor/social worker to see how things are going. Ask about behaviour, 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 his/her physical, emotional or cognitive abilities and be prepared to request updated accommodations at school.