 |
| close |  |
|
||||||
|
|
|
Cancer Reference Information | |
||
|
||||||
|
||||||
|
||||||
|
||||||
|
||||||
|
||||||
|
||||||
| Children Diagnosed With Cancer: Returning to School | |
| |
|
Adults have jobs that anchor them in life -- children have school. When a child is out of school, depression, anxiety, lack of interest, and poor self-esteem can result. Without school, a child can feel lost and without a sense of purpose. Parents may think school is a potentially threatening place for their sick child. They worry it might be overwhelming for their child or that the child will get infections, become overly tired, and maybe even be teased for being different. It is important that children return to school as soon as possible after they're diagnosed with cancer. Children often see school as more than just a place for learning; it's also a place for fun and friendship. Going back to school can be a challenge or a relief for the child with cancer. It also gives the child the clear message that they have a bright future and potential for a full recovery from cancer. Parents will benefit, too, when their lives become more normal. Siblings will also begin to get some much-needed extra attention when the child goes back to school. It truly is a "win-win" situation for the child and the whole family. If you have not seen our information on Children Diagnosed with Cancer: Dealing with Diagnosis, you may want to read it before or while you are making plans for the child's return to school. You can read it online, or you can call us for a copy. Good communication starts early After your child is diagnosed and long before any plans are made to return to school, talk with your child's teacher and school counselor about the cancer. You may also need to write the principal about the child's diagnosis and hospitalization. The teacher needs to know the type of cancer, any treatment the child may be getting, the expected reactions to the treatment , and how long an absence you expect. You will need to keep these lines of communication open as the school year goes on, for the benefit of both the teacher and your child. As much as possible, the child should continue with school work even while in the hospital or when at home before returning to school. Each state has laws to help make this possible. Including the school nurse in these discussions is helpful, too. The nurse may be needed if the child feels ill at school or requires medicines or other health services during the school day. During your child's cancer treatment, you will want to talk with the doctor and the cancer care team to estimate when to plan the return to school. After you come up with a rough date, you can talk with the cancer team social worker and child life specialist to get some ideas about putting this plan into effect. When back at school, your child may now need help that was not needed before. Sometimes called special accommodations, this may include special equipment, using audio books, or getting help with certain physical activities. The teacher and principal will need to know about this, as well as the school counselor and the nurse. Some hospitals and schools have a school re-entry program, where a school liaison or advocate meets with the child and family, finds out what help is needed to return to school, contacts the school, and sets up meetings to inform staff of any special needs of the child. In the meeting, a social worker or nurse will talk with the teachers, parents, and child about how to help the child adjust to being in school again. Even if special accommodations are not likely to be needed, you can still ask for a meeting to develop an Individual Educational Plan (see the section "What is an IEP or 504 plan?") to help address any problems. How your child's cancer may affect school performance Most children will readjust well to school after a cancer illness. But cancer and cancer treatments can cause physical, emotional, and cognitive (ability to think and reason) changes, which can affect the child in school. You can help your child by watching for problems, so they can be dealt with before they become hard to manage. A child who has had cancer may have short-term weight loss or gain, hair loss, skin color changes, and pain. He may have an amputation or an obvious scar from cancer surgery. She may have hearing loss from high doses of antibiotics or chemotherapy. Chemotherapy may also cause fatigue, weakness, and a low blood count that may make the child prone to infection. If a child has had a bone marrow transplant or total body irradiation, his growth may be delayed. Radiation treatment to the head may interfere with her intelligence. This is usually not an immediate effect but can be seen later. If the child is younger when getting the radiation, the effects may be greater. Children may have some learning problems as a result of treatment. Some of these include:
You may also notice:
It's important to remember that creativity and the ability to learn through hearing (rather than reading) is not usually affected by cancer or its treatment. (See our document, Late Effects of Childhood Cancer for more information.) And noticing these problems and getting help with them right away is important for your child's learning and self-esteem. If your child has a learning problem If your child needs extra help learning, keep in mind that all children have a right to education in the least restrictive environment. This means that your child will be with other non-impaired children as much as possible. If parents have an issue with the school and the education their child is getting, they have the right to request a third party mediator to settle disagreements. It is best to meet with the school psychologist or counselor first. This person can test your child for learning problems. If your child has had radiation to his brain, you may want to ask for testing whether you notice a problem or not. The staff will test reading, writing, math skills, memory, comprehension, attention, concentration, and fine motor skills. After getting all of this information, the school can develop an Individual Education Plan (IEP) or a 504 plan for your child. An Individual Education Plan or a 504 Plan is a plan developed by both parents and teachers to meet the individual needs of a student. The plan describes your child's learning problem and sets specific goals for your child's education. It will include referrals to other services if needed, such as occupational therapy or speech therapy, and provide for regular evaluation of the plan. Sometimes students will improve when their work is oral and not written. They may do better when they can use a computer, audio-books, or are given more time to complete assignments. Even if your child had an IEP or 504 Plan when coming back to school, the plan can be changed later to address any cognitive changes due to the cancer or its treatment. (If your child meets the legal requirements to qualify for "special education," the plan is called an IEP; if not, it's a 504 Plan.) It can seem pretty unfair to have cancer and then to struggle to go back to school. But learning as much as you can about potential problems can help you and your child adjust faster. There are other resources that may help you. There is one booklet, Educating the Child With Cancer, which is written by both parents and educators that is provided free by the Candlelighters Cancer Childhood Foundation. See the "Additional resources" section for more details. What if my child doesn't want to go to school? Finding excuses to miss school suggests that the child is struggling with some part of going back there. If the child can tell you why there are problems at school, the parent may want to meet with the school teacher, counselor, and principal to see what can be done to address the concerns. For example, they may want to talk about shorter days for the child who has fatigue. Or they may come up with a plan that combines time at school and home tutoring. It really helps to find ways for your child to be in school at least part of the time, since school lets your child be with other kids and find a routine that works. Older kids and teens may not want to go back to school because they look different, or because their long absences may have changed in their social standing with friends. If treatment has changed the way they learn, that may also be frustrating and hard to deal with. Again, extra support at home and at school can help with this transition back to school. Nurses, school liaisons, and school counselors can help prepare the teacher and classmates for your child's return to school. Don't hesitate to address any concerns that might come up--there are many things that can be done to make the return to school comfortable for you and your child. My child isn't sure what to say when others ask about the cancer. Talk with your child about returning to school and try to be ready for questions classmates may have about his cancer. Explain to your child that his friends may not understand much about cancer and might say and ask some strange things. Some typical questions are: "What is cancer?", "Are you going to die?", "Can I catch it?", and "Can you still play?" Talk with your child about how to answer each of these questions. It may help younger children if a nurse or teacher explains that cancer is not contagious and that no one did anything to cause it. Some children are happy to know that they can respond to many questions without a long explanation:
Depending on the situation, the child may want to change the subject in a friendly way, maybe with talk about school, an offer to play, or another non-cancer-related topic. Teens may want to know where they can go for a break or special support during the day. But others might not want to seem different from their friends, so they don't want to do anything that singles them out. As with younger children, it helps for teens to talk with a parent or counselor about answering questions in a way that feels right for them. Some may choose not to talk about their cancer at school. Others may want to be ready with quick and easy answers for common questions or comments. Every child has a coping style. Helping them figure out what feels best for them before they go back to school will help them deal with questions from friends and classmates in a way that feels OK to them. More information from your American Cancer Society We have selected some related information that may also be helpful to you. These materials may be ordered from our toll-free number, 1-800-227-2345.
The following books are available from the American Cancer Society. Call us at 1-800-227-2345 to ask about costs or to place your order.
National organizations and Web sites* Along with the American Cancer Society, other sources of information and support include: National
Dissemination Center for Children with Disabilities (NICHCY)
Cancer Kids Candlelighters™
Childhood Cancer Foundation CureSearch
National Childhood Cancer Foundation Toll-free number: 1-800-269-7384 (If reach voicemail, leave a message for a return call.) Web site: www.hairclub.com/hc_for_kids.php Offers free hair restoration services to children ages 6 through 17 who have hair loss due to cancer treatments. The National
Children's Cancer Society, Inc. National
Coalition for Cancer Survivorship (NCCS)
Starlight
Starbright Children's Foundation American Pain
Foundation The Leukemia
& Lymphoma Society Toll-free number: 1-800-934-2873 or 1-800-934-CURE Web site: www.braintumor.org Children's Brain Tumor Foundation Toll-free number: 1-866-228-HOPE (1-866-228-4673) Web site: www.cbtf.org National
Organization for Rare Disorders Telephone: 651-789-2300 Web site: www.caringbridge.org CaringBridge offers free, personal Web sites that help you stay connected to family and friends during illness; lets patients and caregivers keep loved ones informed via email. Patient Advocate Foundation Toll-free number: 1-800-532-5274 Web site: www.patientadvocate.org The Patient Advocate Foundation (PAF) is a national non-profit organization that serves as an active liaison between the patient and their insurer, employer and/or creditors to resolve insurance, job retention and/or debt crisis matters relative to their diagnosis through case managers, doctors and attorneys. Patient Advocate Foundation seeks to safeguard patients through effective mediation assuring access to care, maintenance of employment and preservation of their financial stability. PAF programs are listed below. National Cancer
Institute Toll-free number: 1-866-673-7205 Web site: www.livestrong.org The Lance Armstrong Foundation (LAF) unites people to fight cancer, believing that unity is strength, knowledge is power and attitude is everything. LAF works to provide the information and tools people battling cancer need to live life on their own terms Web sites for teens and children 2bMe Beyond the Cure
(part of the National Children's Cancer Society for teens) Fertile hope Group Loop Cancer.net
(was: People Living with Cancer)
SuperSibs! Teens Living
with Cancer I'm too young
for this *Inclusion on this list does not imply endorsement by the American Cancer Society. Other publications* For adults Cancer & Self-Help: Bridging the Troubled Waters of Childhood Illness by Mark A. Chester and Barbara K. Chesney. University of Wisconsin Press, 1995. Care for Children and Adolescents with Cancer: Questions and Answers. National Cancer Institute. Available at: www.cancer.gov/cancertopics/factsheet/NCI/children-adolescents or call 1-800-332-8615. Childhood Brain and Spinal Cord Tumors: A Guide for Families, Friends, and Caregivers, by Tania Shiminski-Maher, Patsy McGuire Cullen, and Maria Sansalone. O'Reilly and Associates, 2001. Childhood Cancer: A Parent's Guide to Solid Tumor Cancers, by Honna Janes-Hodder and Nancy Keene. O'Reilly and Associates, 1999. Childhood Cancer: A Handbook from St Jude Children's Research Hospital, by Grant Steen and Joseph Mirro (editors). Perseus Publishing, 2000. Childhood Cancer Survivors: A Practical Guide to Your Future, by Nancy Keene, Wendy Hobbie, and Kathy Ruccione. O'Reilly and Associates, 2000. Children with Cancer: A Comprehensive Reference Guide for Parents by Jeanne Munn Bracken and Pruden Pruden. 2nd Ed. Oxford University Press, 2005. Educating The Child With Cancer: A Guide for Parents and Teachers, edited by Nancy Keene. Candlelighters Childhood Cancer Foundation, 2003. Living with Childhood Cancer: A Practical Guide to Help Families Cope, by Leigh A. Woznick and Carol D. Goodheart. American Psychological Association, 2002. Surviving Childhood Cancer: A Guide for Families by Margo Joan Fromer. New Harbinger Publications, 1998. When Bad Things Happen to Good People.by Harold Kushner. G.K. Hall, 1982. When Someone You Love is Being Treated for Cancer. National Cancer Institute. Available at: www.cancer.gov/cancertopics/when-someone-you-love-is-treated, or call 1-800-332-8615. Young People with Cancer: A Handbook for Parents. National Cancer Institute, 2003. Available at: www.cancer.gov/cancertopics/youngpeople, or call 1-800-332-8615. Your Child in the Hospital: A Practical Guide for Parents. 2nd Ed. By Nancy Keene. N. O'Reilly & Associates. 1999. (Also available in Spanish) Books for children Although these books are intended for children, younger kids are helped more when an adult reads with and helps the child reflect about what different parts of the book mean to the child. Chemo, Craziness and Comfort: My Book about Childhood Cancer by Nancy Keene. Candlelighters Childhood Cancer Foundation, 2002. Can be ordered from www.candlelighters.org. For ages 6 to 12. Childhood Cancer Survivors: A Practical Guide to Your Future (2nd Ed.), by Kathy Ruccione, Nancy Keene, and Wendy Hobbie, 2006. For older teens. Life Isn't Always A Day at the Beach: A Book for All Children Whose Lives Are Affected by Cancer by Pam Ganz. High-Five Publishing, 1996. Workbook for 6 to 10. Little Tree: A Story for Children with Serious Medical Problems, By Joyce C. Mills. Magination Press, 2003. For ages 4 to 8. Living Well With My Serious Illness, by Marge Heegaard. Fairview Press 2003. For age 8 to 12. Me and My Marrow by Karen Crowe. Fujsawa Healthcare 1999. You can buy it as a book, but it's also available online at: www.meandmymarrow.com/book/toc_ie.htm. For teens. My Book for Kids with Cansur [sic], by Jason Gaes. Viking Penguin, 1998. My Book for Kids with Cansur: A Child's Autobiography of Hope. For ages 4 to 8. What About Me? When Brothers and Sisters Get Sick, by Allan Peterkin and Frances Middendorf. Magination Press, 1992 For brothers and sisters of a child with cancer. For ages 4 to 8. When Someone Has a Very Serious Illness: Children can learn to cope with loss and change, by Marge Heegaard. Woodland Press, 1991. For ages 6 to 12. Why, Charlie Brown, Why? A Story About What Happens When a Friend is Very Ill, by Charles M. Schultz. Ballantine Publishing Group, 1990. For ages 6 to 12. *Inclusion on this list does not imply endorsement by the American Cancer Society. No matter who you are, we can help. Contact us anytime, day or night, for information and support. Call us at 1-800-227-2345 or visit www.cancer.org. References Fasciano K. ASCO Expert Corner: Returning to School After Cancer. Accessed at: www.cancer.net/portal/site/patient/menuitem.169f5d85214941ccfd748f68ee37a01d/?vgnextoid=b09be05611d54110VgnVCM100000ed730ad1RCRD March 6, 2009. Katz ER, Gonzalez-Morkos B. School and Academic Planning. In Wiener LS, Pao M, Kazak AE, et al (Eds) Quick Reference for pediatric oncology clinicians: The psychiatric and psychological dimensions of pediatric cancer symptom management. Charlottesville, VA, 2009: IPOS Press: 223-235. Leigh LD, Miles MA. Educational Issues for Children with Cancer. In Pizzo PA, Poplack DG (Eds), Principles and Practice of Pediatric Oncology, 4th Ed. 2002. Lippincott, Williams & Wilkins, 1463-1476. Noll RB. School and Peer Relationships. In Wiener LS, Pao M, Kazak AE, et al (Eds) Quick Reference for pediatric oncology clinicians: The psychiatric and psychological dimensions of pediatric cancer symptom management. Charlottesville, VA, 2009: IPOS Press: 220-232. Onconurse.com. Patient-Centered Guides. Childhood Cancer and School. Accessed May 11, 2009 at: www.onconurse.com/factsheets/childhood_cancer_&_school.pdf. Upton P, Eiser C. School experiences after treatment for a brain tumour. Child Care Health Dev. 2006 Jan;32(1):9-17. Last Medical Review: 06/02/2009 |