This page includes information about:
- Education Needs While Your Child Is Out of School
- Returning to School
- The Trish Greene Back to School Program
- Educating Homebound Children Using Adaptive Interactive Virtual Technologies
If your child is unable to go to school during treatment, there are resources available to help your child continue to receive an education so that he or she will not fall behind in his or her studies.
- Inpatient Education. Many children’s hospitals have part or full-time teachers available to work with students while they are hospitalized. If the hospital or treatment center does not have in-house teachers available, work with a child life specialist or social worker to arrange for a teacher from the local school district to visit your child. While your child is in the hospital, school time tends to be about an hour a day.
- Homebound Education. If your child is not in the hospital but isn’t yet well enough to return to school, homebound instruction is an option. Your child’s school district can provide a teacher to come to your home on a regular schedule to teach your child. Programs and rules differ by state and school district. A child who will be out of school for 3 to 4 weeks or longer may be eligible for a homebound teacher. Homebound teachers typically coordinate with your child’s regular classroom teacher to plan similar lessons and assignments.
- Adaptive Interactive Virtual Technologies (AiVTs). If your child is homebound, AiVTs may provide new ways to help continue your child’s education.See Educating Homebound Children Using Adaptive Interactive Virtual Technologies below for more information.
Most children with cancer will attend school at least some of the time during and after their treatment. Because school is a place for learning and fun, children benefit from returning as soon as medically possible.
Yet, returning to school after cancer treatment can be a tough adjustment for young survivors. Your child may have reservations about returning to school, including fears about
- The reaction of friends and other children at school
- Missed schoolwork and social activities
- Changes in his or her abilities
- Changes in his or her appearance
- New routines
Discuss any fears your child may have about school before he or she begins. Help him or her develop coping strategies for situations he or she might face. For example, if your child has physical changes from cancer treatment, you should warn him or her about being teased by other children. Help your child learn ways to cope with teasing — and whom to talk to about it — to provide a sense of control over a situation.
You'll need to ensure that your child's education is started, maintained or changed as needed. Your child may have long- or short-term side effects that affect his or her education. Take these steps to ensure that your child gets the support he or she needs at school:
- Reach out to the treatment team. Many hospitals provide support for children as they return to school. An age-appropriate class presentation, either before or after your child returns to school, can let school friends and classmates know that it's okay to discuss the illness. The presentation can be prepared, and possibly given, by a medical team member, who can identify language and concepts the class can understand. If your child has undergone physical changes, such as hair loss, weight gain or scars, it can help to include this topic in the talk. Your child can participate in a way that makes him or her comfortable.
- Meet with school administrators, teachers and counselors before your child returns to school. Make sure the staff is aware of your child's medical condition, and address any special needs or concerns with them.
- Let your child meet with his or her teacher(s) before returning to school to reduce anxiety.
- Ask school staff to promptly identify any issues that arise and provide you with relevant information.
- Ask your child's doctor to write a letter outlining your child's physical limitations or medical needs, such as the need for extra snacks, water or bathroom breaks.
School personnel may not be aware of the potential for long-term and late effects of treatment, therefore parents and medical professionals need to inform educators of the child's needs before he or she returns to school. Parents, educators and medical professionals can work together to develop a program tailored to the child's specific needs.
Resources to help your child be successful in school include
- Neuropsychological testing or school psychological assessment. Children who are at risk for cognitive effects or who are having difficulty in school should have neuropsychological testing done by a licensed pediatric neuropsychologist (an expert in the way the brain works ) to check for possible learning challenges. A school-based assessment may also be an option (or may be a requirement of the school) to help determine your child’s educational needs.
- Special accommodations. You and your child's teachers can take steps to ease your child's return to school, such as allowing him or her more time to complete class work or take exams.
- Legal protections. The following three federal laws help protect the rights of students with disabilities including those with educational needs resulting from cancer treatment:
- The Individuals With Disabilities Education Act (IDEA)
- Under IDEA, public school children with disabilities may receive an Individualized Education Plan (IEP) that outlines a formal plan to accommodate a child's individual needs.
- The Rehabilitation Act of 1973 – Section 504 Plan
- The Americans With Disabilities Act (ADA)
- The Individuals With Disabilities Education Act (IDEA)
- Long-term planning. Plans can be developed to help a child through certain situations such as transitioning from middle school to high school or going on from high school to secondary education and adult life.
For more information on returning to school and laws that help protect children, download or order the free LLS booklet Learning & Living with Cancer: Advocating for Your Child's Education Needs.
Read the PDF, School, for more information.
The Trish Greene Back to School Program offers free information and materials to parents and educators that can help ease your child back to school after an absence. The program was developed to encourage communication among parents, young patients, healthcare professionals and school personnel to assure children a smooth transition from active treatment to back to school.
- Staying Connected: Facilitating the Learning Experience During and After Cancer Treatment
Staying Connected is a FREE, online professional development program for teachers, school nurses, social workers, school counselors, and other school and college personnel focused on the needs of children, adolescents and young adults (AYAs) who have survived or are being treated for any type of cancer. This interactive educational program offers 6.5 continuing education credits.
This interactive online continuing education program provides information on:
- Cancers that affect children, adolescents, and young adults
- Psychosocial challenges and strategies to help meet the students’ needs
- Education laws that protect survivors’ rights
- Strategies to help cope with grief and loss
- Resources to support schools and families
Click here for more information or to get started.
- The Leukemia & Lymphoma Society’s Free Booklets and Videos
- Learning & Living with Cancer - This booklet can help parents advocate for their child's educational needs. It examines the learning challenges your child may face both during and after cancer treatment, laws that protect the educational needs of children with cancer and specific ways that schools can help meet a child's educational needs. (Also available in Spanish.) Click here to download or order copies.
- Beyond Treatment PFD - This chapter provides information about long-term and late effects of childhood cancer treatment to help parents understand theses effects and provides guidance and resources for dealing with these treatment effects. Click here to download or view a copy.
- Pictures of My Journey Coloring Book- This coloring and activity book can help children ages 3 to 11 cope with the new people, situations and concerns that are part of the childhood cancer experience. Click here to download or order copies.
- The Stem Cell Transplant Coloring Book - This coloring and activity book is for children coping with having a stem cell transplant and for his or her siblings and classmates, as well as for children with a parent undergoing a transplant. Click here to download or order copies.
- Why Charlie Brown, Why? - This DVD tells the tale of a classmate who is diagnosed with leukemia. Using Charles Schulz's lovable Peanuts characters, the video helps children understand what leukemia is, how it's treated and how a child recovering from leukemia feels. When a classmate teases the girl because she has no hair, her friends rally around her and help the other children understand why his remarks were hurtful. Produced by Charles Schultz and United Media. (Also available in Spanish.) Contact an LLS Information Specialist for copies.
For more information about The Trish Greene program, contact an LLS Information Specialist.
Before her death from cancer in 1999, Trish Greene, Ph.D., was the senior vice president of Patient Services at The Leukemia & Lymphoma Society. She was devoted to patient services for cancer patients and created the Back-to-School program. Her devotion to patients and their families will never be forgotten.
The use of Adaptive Interactive Virtual Technologies (AiVT) is becoming a more accessible and practical option to connect homebound and hospitalized children to their classrooms. With AiVT, the child can receive as close to an equal education as possible, without actually being present in the school. When health permits, the child can attend school from their home or hospital and interact with their peers in real time, during regular school hours. This can help to prevent educational consequences such as falling behind academically and also social consequences such as feeling isolated from peers.
What exactly is AiVT?
There are many types of AiVT and choosing the right one will depend on the needs of your child. AiVT devices are designed with high definition visual and audio capabilities that facilitate collaborative conversations and creative an immersive environment. All AiVT devices require internet connection.
One example of an AiVT device is a robot that can be controlled by a tablet or computer to move between the student's various classrooms. These robots require Wi-Fi in the school hallway. Another example is an AiVT with stationary endpoints. This type of device is similar in size to a computer monitor and generally provides a higher quality audio input/output with a wider field of vision than a robot, but needs to be put on a cart and manually moved between classrooms.
The use of AiVT aids in:
- Minimizing the child’s isolation
- Keeping the child's education on par with his/her peers, so he/she doesn't fall behind academically
- Regaining and maintaining an aspect of the child's "normal" life
- Providing peer-to-peer real time engagement
- Bridging a gap if the child is treated outside of the school district or if he/she can't have a tutor because of contact isolation
- Allowing the child to focus positively on the future of life and educational goals
- Minimizing long-term psychological and mental survivorship issues
- Allowing classmates to interact with the child and develop empathy, expanding their understanding of diversity and inclusiveness.
How do I get Adaptive Interactive Virtual Technology for my child?
- Build your Team. Start by engaging the school's principal, counselor, special education or student services director. Let them know you would like your child to be virtually connected during his/her treatment, and give them the opportunity to research what is possible in your district. Many states are passing Virtually Inclusive Education Legislation that require schools to provide AiVT to keep homebound and critically ill connected to their schools during treatment. If its not yet mandated in your state then your principal will need to get approval from the district for any use of AiVT.
- Request in writing the use of AiVT at your child’s 504/IEP meeting. Ask that the technology director of your school district be present at the meeting. Oftentimes school districts already have these technologies in the district - just not in use for a homebound/hospitalized child.
- Stress the important benefits for keeping your child connected during homebound/hospitalization and the benefits to his/her classmates (see above section).
- Involve your PTA/PTO. Get the support of your school community. More often than not, they will be able to advocate for you and also help with fundraising (if necessary) for the AiVT device, which could also potentially benefit other children.
- Reach out to pediatric cancer organizations that supply/loan AiVT during a childs treatments. Search online for “connecting kids with cancer.”
- Talk with your hospital hematology/oncology education director. There may be a program already in place that enables the use of AiVT while the child is inpatient at the hospital.
Information about virtual inclusion was provided by Lynn Schaeber.
- Download of order The Leukemia & Lymphoma Society’s free booklets
- Coping with Childhood Leukemia and Lymphoma
- Learning & Living with Cancer: Advocating for Your Child's Educational Needs
- Returning to School