Courtesy of CURESEARCH For Children's Cancer
After “what can we do?” the question schools will raise is whether your child can do schoolwork. Sometimes parents are surprised by that question, thinking, “My child has just been diagnosed with cancer, why are you asking about schoolwork?!”
The answer to this question is that everyone — you, your family and your health care team — believes your child will become a cancer survivor. Maintaining your expectations about doing schoolwork from the beginning increases the likelihood that your child will be able to return to his or her grade and continue to pass through school without losing a year. By doing homework and by getting extra help or tutoring in the hospital or at home, your child will feel prepared to return to the classroom. Taking exams, including finals, state exams or even college entrance exams such as the SATs or ACTs, in the hospital can often be arranged depending on your child’s condition. Tests and projects can also be postponed if necessary. The key to helping your child succeed academically is excellent communication between you and your child’s school, and maintaining the same high expectations for your child’s performance and behavior as you had before cancer came into your life.
Most cancer centers that treat children provide hospital teachers who can help students keep up with schoolwork during hospitalization. In many districts, a child who is in the hospital for five days or more will qualify for in-hospital teaching. Hospital teachers usually provide one hour a day of private instruction; additional group instruction may be available if medically approved. If the hospital does not have a full-time teacher, the hospital social worker, child life specialist, or nurse coordinator can help you contact your school district to arrange for a teacher to work with your child. Smaller districts that do not have designated hospital teachers often recruit teachers from schools near the hospital.
When a child will be in the hospital for an extended stay, parents are encouraged to make sure their child has been referred for hospital teaching and to consider meeting with the hospital teacher to review the teaching plan. Once your child is enrolled in the hospital school program, the hospital teacher will contact your child’s regular school and set up a plan to get homework assignments and to turn in completed work. The hospital teacher will arrange regular teaching times that accommodate your child’s medical needs, ability to concentrate and the hospital schedule.
Hospital teachers may not be able to cover every subject, especially for middle- and high-school students who are taking advanced courses. However, school credits may still be earned for in-hospital instruction and your child can remain connected to the regular school program. When your child is ready to be discharged, hospital teachers can help arrange for a Home Teacher or your child’s return to regular school.
For advanced students there are a number of options. First, the school may be able to supply a tutor with knowledge in the advanced subjects. In some school districts such skilled teachers are not available for tutoring. In this case, the family can sometimes work with the school to hire tutors from local universities, community colleges or from other high schools. If the school district is not able to accommodate your child’s education needs, the district should reimburse the family for the tutoring. Lastly, in some cases where the student would benefit from a reduced class load, he or she can drop a class (for instance chemistry or AP British Literature) and then make up the additional class at a community college during the summer.
Home Bound Schooling
When your child is discharged from the hospital but unable to return to school because of health concerns, the school district must provide a teacher who comes to your home regularly to instruct your child. Typically, a student must be out of school for 3 to 4 weeks to qualify for a home teacher.
Once your child is enrolled in home teaching, the home teacher will contact your child’s regular school teachers to make sure that your child is getting the homework assignments needed to prepare for returning to school when medically appropriate. As the parent, you should meet with the home teacher to review the plan for home teaching and to provide clear information about your child’s illness and treatment so lessons can be planned accordingly. It may be helpful to have the home teacher communicate directly with your child’s oncology nurse or social worker so they can answer any specific questions and also serve as an ongoing resource when needed.
Home instruction usually occurs two or three times per week for an hour or more each visit and is scheduled around medical appointments or treatments. The teacher will provide instruction, review homework and make assignments or other work such as projects. A home teacher may continue to work with a student during ongoing hospitalizations, especially if the hospital is nearby. If the child has special learning needs, the home teacher can assist in accessing appropriate school services (see Learning Problems During or After Treatment) for any child requiring special education accommodations.
While home teaching provides less actual teaching time than school, most students will be able to earn the credits needed to stay current with regular classes and grade placement. When a child is scheduled to return to regular school, the home teacher can also facilitate re-entry.
Courtesy of CURESEARCH for Children's Cancer
Educational Difficulties Associated with Illness or Treatment
Treatments for cancer during childhood or adolescence can affect educational progress due to prolonged absences or reduced energy levels. In addition, some types of cancer may require therapy to control or prevent spread of the disease to the brain or spinal cord (central nervous system). This therapy can sometimes affect learning abilities. Parents and teachers should be aware of potential educational problems that may be related to cancer treatment so that children and teens at risk can be monitored closely and given extra help if needed.
Types of Educational Difficulties that May Be Experienced
The brain is a complex structure that continues to grow and develop throughout childhood and adolescence. Some problems may not become apparent until years after therapy is completed. Common problem areas include:
*Social situations, especially with children who are not aware of a child’s cancer
Factors that May Place Children and Teens at Increased Risk for Difficulties in School Include:
*Diagnosis of cancer at a very young age
*Numerous or prolonged school absences
*A history of learning problems before being diagnosed with cancer
*Reduced energy level
*Cancer treatment that affects hearing or vision
*Physical disabilities resulting from treatment
*Cancer therapy that includes treatment to the central nervous system
Who is at Risk for Developing Educational Difficulties?
Children treated for brain tumors are the most likely to have received treatments such as surgery and cranial radiation therapy that may affect academic abilities. Since treatments vary widely, not everyone who was treated for a brain tumor is at increased risk.
Cranial radiation is sometimes given to children with cancers other than brain tumors, such as some leukemias. Total body radiation, which includes the brain, is a common treatment for children undergoing certain types of bone marrow or stem cell transplantation. Cranial radiation treatment, especially at high doses, is a risk factor for educational difficulties.
There is some evidence that children treated with chemotherapy directly to the brain, such as intrathecal methotrexate or triple intrathecal therapy regimens, may be at increased risk, although the likelihood is less than for a child with a brain tumor.
Recommended Psychological Evaluation and Testing
The ideal recommendation is that any young person who is having difficulties in school should undergo a specialized evaluation by a child psychologist experienced in the types of issues faced by children with cancer. Children, who are doing well but are at risk for later educational difficulties because of their type of illness or treatment (any brain tumor), should also be evaluated to obtain baseline scores that can be compared to findings later. Parents and teachers should carefully monitor the educational progress of all children treated for cancer. Further evaluations may be necessary if the child begins having trouble in school or develops any of the problems listed above. In addition, repeat testing is often recommended at times when academic challenges are more likely to occur, such as at entry into elementary school, middle school, high school and during pre-college planning. The Children's Oncology Group recommends that children with brain tumors be evaluated.
Help with Educational Difficulties
If a problem is identified, special accommodations or services can be requested to help maximize the student's learning potential. The first step is usually to schedule a meeting with the school in order to develop a modification in the child's educational plan. This may be done in an informal manner, or it can be more formalized for public school students as a Section 504 Modification (504 Plan), which is covered by civil rights law. The more formal approach requires the public school to follow-through with the plan and allows for legal recourse if it is not adhered to. Private schools are not compelled to comply with such modifications, but are usually very helpful in making appropriate accommodations as needed.
Examples of strategies that are often helpful for children and teens with educational problems related to cancer treatment include:
*Seating near the front of the classroom
*Minimizing the amount of written work required
*Use of tape-recorded textbooks and lectures
*Use of a computer keyboard instead of handwriting
*Use of a calculator for math
*Modification of test requirements (extra time, oral instead of written exams)
*Assignment of a classroom aide
*Extra help with math, spelling, reading and organizational skills
*Duplicate set of textbooks to keep at home (should be done for any child with cancer during treatment)
Special Educational Services for Children with Cancer
Free, special educational services are available through public schools for all children, three years old through high school graduation, who have unique educational needs that interfere significantly with the child's ability to learn and make progress. These educational needs include children who are gifted, have special health care needs, children with special learning needs or children with developmental delay. These special educational services are mandated by federal and state educational law for students in every school district in the United States, and are delivered through the Department of Special Education in each district. Children in private schools may also receive these public special educational services at local public schools. Services may vary from modifications in the regular program to assistance by educational specialists at school for one or more periods to a special self-contained class or special school for the most intensive needs. Children with cancer may qualify for special education services under the category of "Other Health Impaired (OHI)."
In order to receive special education services, the parent and child need to go through the following steps.
Parents must formally request an Evaluation for Special Educational Services at the office of their child's public school. Parents must provide an explanation for why they are making the request. For private school students, this request is made at the office of the local public school the child would attend if he or she were in public school. This request should be made in writing to the school principal, vice principal or campus representative of special education services for the school district. The evaluation is to determine if your child will qualify for an Individualized Educational Plan (IEP) and special educational services.
Once the Request for Evaluation is received, it will be forwarded to the school district's Department of Special Education, which is responsible for all special educational services within the district. The school district must schedule an evaluation promptly (usually within 90 days). Evaluations include personal interviews with you and your child, psychological testing, direct observations, reviewing records, etc. The evaluation is typically conducted by a school psychologist employed by the school district, along with other relevant health specialists (e.g., occupational therapist, speech therapist, physical therapist, etc.). You may request that private psychological or neuropsychological test information from your child's medical center or a private evaluation also be included in the evaluation process.
Once the evaluation is completed, a meeting is scheduled at the school for parents, the student (depending on age and local approach), and the evaluation team from the school district. At this IEP Meeting, the entire group will determine if the child is in need of educational assistance and qualifies for special services. If the child qualifies for services, an IEP document will be prepared that clearly states exactly what services the child needs and what the concrete goals are for these services.
An IEP typically includes the following components:
*Assessment of the child's current level of educational performance
*Impact of the illness on learning, thinking, energy/fatigue
*Medical precautions and special needs (if any). For example: extra bathroom breaks, drinking water during class, snacks, limited sun exposure, modified physical education, monitoring of central venous access device, etc.
Statement of goals to be achieved under the IEP:
*Statement of educational services that the child needs
*Date the educational services will begin
*Description of the extent to which the child will participate in regular education programs
*Justification for the type of educational placement the child will have
*List of individuals responsible for the implementation of the IEP
*Objective criteria and evaluation procedures
If parents agree with the conclusions and the IEP, they may sign the document and it becomes a binding document that is reviewed at the end of each school year or whenever the parents or school feel something has changed.
If parents disagree with the findings and recommendations of the IEP meeting, they do not have to sign the document and they may appeal the process (called a Due Process Review). The appeal is a formal process that is designed to help resolve the dispute and make sure the child will receive whatever educational services he or she requires and is entitled to.
An annual IEP meeting is held to evaluate the child's progress and determine what services are needed for the coming school year. As needs change, services may be increased, decreased or stopped altogether.
Anytime the child's need have changed, or the parent does not feel the services are meeting the child's needs, the parent may request that the IEP team meet to evaluate these concerns further. Parents can bring people to the meeting, such as a hospital staff member or an educational advocate. This may be done any time during the school year.
If a child was receiving special education assistance prior to their medical diagnosis of cancer for any reason, such as a learning disability, their existing IEP may be updated to now account for new educational needs due to the illness. An IEP may also be useful for children who have been out of regular school for an extended time and need extra educational support so they are caught up with the other students in the class.
Courtesy of CURESEARCH For Children's Cancer
If your child has been able to keep in touch through texting, phone calls, Skype or Facebook, then many classmates will have at least some idea of what your child has experienced since diagnosis. However, relying on children’s — and even teenager’s — understanding from such contacts alone is usually not sufficient. If possible, ask someone from your child’s oncology team (e.g., nurse, social worker, child life specialist) to talk with the school. At the least, a medical person should talk with the school nurse. It is best, however, if someone can talk with the nurse, involved administrators, key teachers and, most importantly, your child’s classmates. Some children enjoy participating in this process while others would rather have it occur before they return to school. The hospital professional can answer questions and help reduce any anxiety in staff and students about how to treat your child and dispel myths about what causes cancer and whether or not cancer is contagious. The speaker should also have students brainstorm how to welcome your child back into the classroom.
If no member of the team can provide this service, then we urge you to talk with your child’s classmates. Of course, it is important to get your child’s permission to do this, and even better if your child will join you in presenting to the class. However, you need to be respectful of your child’s anxieties and be prepared to meet with the class alone. Occasionally, a child, especially a younger teen, will say no to any communication with the class, at least initially. After getting back to school, however, the child’s anxiety about being perceived as “different” because of the cancer begins to lessen. Sometimes children are surprised to learn that their illness has actually given them celebrity status and their willingness to discuss experiences may increase.
Children in the classroom will be interested in the fact that your child had to take medication and they often want to know if hair that has fallen out will grow back. Typically, classmates do not know about catheters and what having one means in terms of activities. Young classmates’ major concerns are often about whether they can catch cancer (like a cold) from your child. Students of all ages need to know that getting cancer is no one’s fault; in fact, we really do not yet understand why some children or teens get cancer at all.
Courtesy of: CURESEARCH for Children's Cancer
Before your child returns to school, you will need to meet with school staff and administrators (the principal, your child’s teachers, the school nurse and others who will be working with your child) in order to explain any special needs or supervision your child may require while at school.
The school’s major concern will be what to do if your child has an “event,” a medical issue like a catheter becoming dislodged, nausea and vomiting, fainting or passing out. Whom do they call? What immediate measures should they be prepared to take? How likely is any specific event to occur at all? We suggest that parents provide school personnel with emergency contact information for their child’s oncology team in case any urgent medical needs arise. Schools should also be informed that they should immediately notify parents and/or a child’s healthcare team for the following issues:
*A fever of greater than 101F.
*Exposure to chickenpox.
*Active bleeding that includes nosebleeds, bruising, pink, red or brown urine, red or black “tarry” stools, or “coffee ground” vomit.
*Central line problems, which include any pus, swelling or redness around the site. If you notice leaking or a break in the external tubing, clamp the tubing between the leak and the child.
Staff will need to be made aware of the physical and psychological challenges that children with cancer can face, including hair loss, decreased energy, and increased risk for bruising and nosebleeds. Some temporary changes include weight gain or loss, mood swings, facial fullness, problems with coordination, difficulties with fine and gross motor control, muscle weakness and body marks resembling tattoos, which identify sites of radiation. The child may also have a central line which will be closed off and protected and should be covered by clothing when the child is dressed.
Many children undergoing cancer treatment become fatigued easily. Your child’s ability to participate in activities may be limited, although we recommend allowing your child to do as much as he or she feels able to do. The fatigue may be severe enough that naps during school time or attending for only half days is necessary. At times, the fatigue may also make it difficult for your child to complete assignments. You should ask teachers to consider allowing extra time on those occasions when your child is especially tired. However, teachers should still have as high expectations for your child as for any student in the classroom.
Some medications, such as steroids, can make children more energetic and challenging to handle. Teachers should be aware of your child’s medication schedule, particularly when drugs that might alter your child’s mood are being used. At the same time, you should let teachers know you expect your child to be respectful and follow the same rules as the other children in the classroom. Ask to be notified if your child is not able to meet these expectations.
While your child is receiving treatment, none of your children should be exposed to chicken pox or measles. If someone in any of your children’s class has either of these illnesses, a letter should be sent to parents reminding them to keep their sick children at home. This is standard practice in some school districts whether a child in the classroom has cancer or not, but it is wise to check to be sure that this will be done especially in your child’s case.
Just as teachers already do with their classes, children in the classroom should be reminded to wash their hands regularly and not to share food or water bottles with one another in order to minimize transmission of illnesses.
Discuss any particular issues related to taking medications, needing to eat more frequently or on a schedule, or the likelihood of needing increased bathroom breaks.
Ask teachers to include your child in all activities, regardless of whether or not your child misses a class or even a whole day of school. If there is a field trip coming up, ask the teacher to let you know far enough in advance that you can make plans to include your child. If the class works on a group project, ask the teacher to assign your child to a group, even if your child is not present when assignments are made. When calling attendance, ask the teacher to read your child’s name, even when the teacher knows your child will be absent. All of these actions by the teacher show that your child is part of the class despite frequent or prolonged absences.
You should also talk with the school about “accommodations,” or changes in certain rules that make it easier for your child to remain in school and do well. Common accommodations include:
*Attending half days
*Having extra time to move from room to room when classes change
*Being able to go to the nurse’s office or bathroom without having to ask permission each time
*Being able to use the elevator
*Being excused from physical education or recess
*Permission to wear a hat or scarf if your child has lost hair
*Providing an extra set of textbooks that can remain at home so they do not need to be carried back and forth and are available if your child cannot attend school
In most schools, the principal or other administrators can approve these simple changes in routine. Occasionally, schools will request a physician’s recommendation. Less common accommodations include allowing extra time to take a test, taking a test in a separate room to minimize distraction, or having someone read the test to your child. These kinds of changes often require that the school develop a 504 Plan with you and your child’s teachers.
Courtesy of CURESEARCH for Children's Cancer
Approval to return to school after an extended medical absence can only be made by your child’s attending oncologist. Very likely, your child will still be receiving anti-cancer therapy when the physician feels it is safe and appropriate to return to school. Although a child still receiving treatment may be at risk of getting an infection or “catching something” from classmates, the benefits of attending school and being with other children usually far outweigh the risks.
Many families prefer a gradual return, especially if the cancer or treatment has been particularly debilitating. In these instances, parents may request return to a single class for a week and then half days for a week before return to the regular school day.
Courtesy of CURESEARCH For Children's Cancer
Courtesy of: CURESEARCH For Children's Cancer
When a school-aged child is diagnosed with cancer, it is important to keep the child connected to school and friends. These connections send an important message: your cancer will be cured; you need school for your future; and you will be with your friends and classmates again.
For children and adolescents, school is their job. School provides opportunities to develop social skills and gain knowledge needed for a successful future. Maintaining social and academic ties can reduce isolation and loneliness, and keep children focused on positive aspects of their life and future.
There are many challenges — for the child, parents, siblings, teachers, school administrators, and the other students — to keeping the child with cancer involved in school. For adults, the most important thing to recognize is that children’s cancer is different from adult cancer; the overall survival rate is high for many forms of cancer in children.
Classmates need to know that most children’s cancer is curable. It is likely that they have known about adults with cancer, perhaps a grandparent or other relative who did not survive, making them think that all cancer is fatal. They may also think they can catch cancer.
School personnel should make every effort to reach out to families and accommodate students with cancer. It is very likely that the child will not only return to school but also will graduate on time.
Here, we offer practical suggestions for schools and parents to help ensure that children with cancer can continue in school. These recommendations are designed to reduce isolation of the child during the early phases of treatment and to create an effective pathway to school re-entry after an absence.
These recommendations are based on the extensive clinical experience of our editorial team, who, in addition to over 100 years of combined clinical experience working with children with cancer and their families and schools, have also published research related to the social and academic adjustment of children with cancer. In short, these recommendations and methods are based on our clinical experiences, data from schools, feedback from parent advocates, and ideas from other disciplines. We hope these suggestions will improve your child’s connection with school and classmates.
Courtesy of: CURESEARCH For Children's Cancer
Because cancer in children is rare, most school professionals will know only one child who has cancer during their career. Applying the same rules schools have for other illnesses or injuries works well in most cases. However, there are times when schools need to be creative in responding to a particular child and family.
We recognize that it is hard to generalize about children’s cancer because there are many different types and treatments vary. For example, the duration of treatment times can vary from a single surgery for a child with a benign tumor, to 3 months for some children with lymphoma, to as long as 3 years for those with acute lymphoblastic leukemia. The intensity of treatment also varies. Some children are able to attend school while being treated and others need to be in the hospital for treatment and extended recovery. We recommend that you work with the child’s parents and, if possible, a member of the child’s medical team to develop plans that will meet the needs of the individual child.
Courtesy of: Dana Farber Cancer Center