It is normal for parents not to even think about school during the early efforts to save their childs life, but a quick return to school is often strongly advised. Going to school helps children regain a sense of normalcy and provides a lifeline of hope for the future.
Preparation is the key to a successful reentry to school. You may want to prepare a written statement that covers the following concerns:
• A physicians statement regarding your childs health status, ability to return to school environment safely, and probable effect on attendance.
• Whether your child will attend full or half days.
• Whether your child can attend unrestricted general physical education classes, general EE. with restrictions (e.g., no running), or adaptive physical education for disabled children.
• A description of any changes in her physical appearance (e.g., will she wear a wig?).
• His feelings about returning to school.
• Any anticipated behavioral changes resulting from medication or treatment.
• The possible effect of medications on her academic performance.
• If any medications or other health services need to be given at school.
• A reminder to never give any medication without parental permission.
• Any special considerations, such as extra snacks, rest periods, extra time to get from class to class, use of the nearest restroom (even if its the teachers), and the right to go to the restroom without permission.
There was a beanbag chair in the back of Brent's class, and he just curled up in it and went to sleep when he needed to.
• Concerns about exposure to communicable disease.
• A list of signs and symptoms requiring parent notification—e.g., fever, nausea, vomiting, pain, swelling, bruising, or nosebleeds. If parents are divorced, which parent to notify or which to notify first.
• A reminder that the teachers job is to teach, and the parent and nurse will take care of all medical issues.
Request in writing a meeting that includes parents, your educational advocate, teachers, administrators, school nurse, school counselor and psychologist, and special education service providers. At this meeting, answer any questions about the information contained in the letter, pass out booklets on children with cancer in the classroom, formulate a communicable disease notification strategy if necessary, discuss the ongoing need for appropriate discipline, and do your best to establish a rapport with the entire staff. Take this opportunity to express appreciation for the schools help and your hopes for a close collaboration in the future to create a supportive climate for your child.
I still feel unbelievable gratitude when I think of the school principal and my daughter's kindergarten teacher that first year. The principal's eyes filled with tears when I told her what was happening, and she said, "You tell us what you need and I'll move the earth to get it for you." She hand-picked a wonderful teacher for her, made sure that a chicken pox notification plan was in place, and kept in touch with me for feedback. She recently retired, and I sent her a glowing letter which I copied to the school superintendent and school board. Words can't express how wonderful they were.
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.
The following are additional parent suggestions on how to prevent problems through preparation and communication:
• Keep the school informed and involved from the beginning. This fosters a spirit that "we're all in this together."
• Reassure other children that your child poses no health threat to anyone. Leukemia isn't contagious.
The school librarian had a bed set up in the library for ailing students to use. I found out that sometimes Preston would spend the whole day there, because he was just too exhausted to attend class. It was very important to him and his sense of well-being to be at school. He would just drag himself in there in order to be with the other kids. Fortunately, all of his classmates were always nice to him.
• Bring the pediatric oncology nurse back into the class to talk about cancer and answer questions whenever necessary. If treatment is lengthy, this should also be done at the beginning of each new year to prepare the new classmates.
• Develop a 504 plan (see section "Your legal rights" later in this chapter) to get exemptions to rules and policies if you think it will help your youngster. For example, wearing a hat can sometimes eliminate teasing, and having a complete set of textbooks at home can prevent the need to carry a heavy backpack.
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.
• For elementary school children, enlist the aid of the advocate or school counselor to help select the teacher for the upcoming year. Although this violates the policy at some schools (and you have no legal right to it), you can ask nicely that the policy be modified for your child.
Because my son has had such a hard third-grade year, I have really researched the fourth-grade teachers. I sat in class and observed three teachers. I sent a letter to the principal, outlining the issues, and requested a specific teacher The principal called me and was very upset. He said, "You can't just request who you want. What would happen if all the parents did that? You'll have to give me three choices just like everybody else." I said, "My son has had three years of chemotherapy, has a seizure disorder, behavior problems, and learning disabilities. Can you think of a child who has greater need for special consideration?" My husband and I then requested a meeting with him, and at the meeting he finally agreed to honor our teacher request.
• Prepare both teacher(s) and student for the upcoming year.
I asked for a spring conference with the teacher selected for the next fall and explained what my child was going through, what his learning style was, and what type of classroom situation seemed to work best. Then, I brought my son in to meet the teacher several times, and let him explore the classroom where he would be the next year. This helped my son and the future teacher adjust to one another.
• Get help from school counselors to talk about grades, classes, and other school issues. A mental health therapist can talk with your child about emotions and the childs life both inside and beyond school.
My daughter went to a psychotherapist for the years of treatment. It provided a safe haven for frank discussions of what was happening, and also provided a place to practice social skills, which was a big problem for her at school.
• Recognize that children's response to treatment varies.
Chemotherapy can really zap some kids, leaving them a pale, tired version of themselves. Other children can have chemo and still have lots of energy to participate in school. Some children have always gotten every little bug they are exposed to—others are never sick.
We were some of the lucky ones. Robby continued to attend school, do karate, and play baseball. He had few hospitalizations and rarely even had a cold. Cancer was pretty much just a reason he had to go to the doctor every once in a while. We didn't dwell on it, but we also didn't deny it. He still had to make his bed every morning and do his homework and behave in an acceptable manner
• Realize that teachers and other school staff can be frightened, biased, overwhelmed, and discouraged by a child in their classroom with a life-threatening illness. Accurate information and words of appreciation can provide much needed support.
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Although nobody gets a parenting manual or bible in the delivery room, it is our duty as parents to try to make our kids as well rounded, happy and confident as possible. It is a lot easier to bring up great kids than it is to try and fix problems caused by bad parenting, when our kids have become adults. Our children are all individuals - they are not our property but people in their own right.