Preparation is the key to a successful return to school. You and the hospital school liaison may want to prepare a package for the school staff that contains the following information:

• A doctor’s statement that describes your child’s health status; ability to safely return to the school environment; physical restrictions, including any limits to physical education or recess; and possible attendance disruptions.

My son was diagnosed at age 14. He was starting ninth grade, the last year of junior high. He missed about a third of that year. He was able to keep up, thanks to some terrific teachers and a very cooperative administration, not to mention being a really motivated kid. He hated missing school and would go even when he didn’t feel very good, just to say he’d been to school that day, even if only for two periods.

• Whether your child will attend full or half days.
• A description of any changes in physical appearance, such as weight changes or hair loss, and suggestions about how to help classmates handle them appropriately.

Jeremy’s kindergarten teacher was the pits. Jeremy was on chemotherapy, and she told Jeremy not to wash his hands, as it took too long. I was disappointed that even after the nurse came to class and gave a presentation, the kids still teased my son. They would say things like, “You’ve got Jeremy germs; you are going to catch cancer,” and “You can’t get rid of cancer; you always die.” During his kindergarten year, Jeremy needed to have heart surgery. I called the teacher to let her know, but my son did not hear from anyone in his class, not one card or phone call, even from the teacher. She didn’t even tell the class why Jeremy was absent.

• A request that your bald child be permitted to wear a wig, hat, or scarf to school.
• An explanation of possible effects medications may have on academic performance and a list of medications or other health services that will need to be provided at school (see section later in this chapter called “Individual healthcare plan”).
• A list of signs and symptoms requiring parent notification (e.g., fever, nausea, vomiting, pain, swelling, bruising, or nosebleeds) and notification procedures to be followed.
• Concerns about exposure to communicable diseases, if needed (e.g., if you live in an area with low immunization rates, you will need to know whenever students in the school have chicken pox, whooping cough, measles, or mumps).
• Any accommodations needed, such as extra snacks, rest periods, extra time to get from class to class, use of the nearest restroom (even if it is the staff restroom), and the need for restroom breaks without permission. This list should also include any requests for academic accommodations such as extended time for tests, reduced workload, or access to online textbooks. (These services are discussed in greater detail later in this chapter.)

My 16-year-old son was allowed to leave each textbook in his various classrooms. This prevented him from having to carry a heavy backpack all day. They also let him out of class a few minutes early because he was slower moving from room to room.

School reentry plans require peer education and teacher education, but the guiding principle should be meeting the individual needs of the returning student. Therefore, frequent communication among school personnel, parents, the student, and the hospital liaison is vital before, during, and after school reentry. The following are parent suggestions for preventing problems through preparation and communication:

• Keep the school informed and involved from the beginning to foster a “we’re all in this together” spirit.
• Bring a pediatric oncology nurse or school liaison into the classroom to talk about childhood cancer, explain that it is not contagious, and answer questions. Make sure to ask whether your child wants to be part of the presentation. If treatment is lengthy, this should be done at the beginning of each school year to prepare new classmates. Because the sick child may be given accommodations that could cause other students to feel upset or jealous, the nurse or school liaison should explain that the student has some different rules because of the illness.

Elizabeth was in preschool at the time of her diagnosis. The manager did a wonderful job of integrating her back into the fold. All of the other children at the school were taught what was happening to Elizabeth and what would be happening (such as hair loss). They learned that they had to be gentle with her when playing. The manager was a former home health nurse, so I was very confident that she would be able to take care of my daughter in the event of an emergency. She was already familiar with central lines and side effects from chemotherapy. She was a gem!

• Arrange places for your child to rest if she is too tired to participate in class.
• Have a mental health therapist talk with your child about his emotions and life both inside and outside of school.

My son Zachary has been out of school for over a year. Zachary received a stem cell transplant, and school was not an option for him in the months afterwards. He is taught by a teacher provided by our county for “homebound” students. She’s great, and Zach is ahead of the regular second grade curriculum. Zach is so comfortable with his teacher that he doesn’t want to return to school in the fall. He feels everyone will think he’s weird and will tease him. I realize this is an important issue for him, so he is seeing a therapist in preparation for return to school.

• Realize that teachers and other school staff can be frightened, overwhelmed, or discouraged by having a child with a life-threatening illness in their classroom. Accurate information and words of appreciation can provide much-needed support.

It can be so helpful for the school staff to have periodic meetings to address concerns, fears, progress, or to learn about upcoming procedures. I don’t think enough parents know they can request meetings (for an Individual Education Plan [IEP] or otherwise) as they feel the need, and so can school staff. When Matt started elementary school, I requested monthly inclusion meetings with his IEP team for the first semester and then every other month during the second semester. We wrote this in his IEP so it actually happened. I learned to do this from a parent much wiser than me!

A helpful and free handbook for school personnel is available at www.lhsc.on.ca/Patients_Families_Visitors/Childrens_Hospital/Programs_and_services/HelpingSchools.pdf.