Information and Support During Treatment
Our Family Support Program helps ease the emotional strain a childhood cancer diagnosis takes on families by providing a case manager who stands by a family’s side throughout their journey. NCCS case managers are trained in providing practical and emotional support to parents and caregivers. These dedicated individuals offer support during difficult times, educate parents and caregivers on how to best advocate for their child and provide referrals when needed.
The organization hosts a private Facebook group that provides a compassionate and supportive environment for childhood cancer survivors and their parents/guardians. The group provides a safe place to connect with peers, share tips/resources and provide or receive encouragement.
Our Mentoring Program pairs a younger child in treatment (ages 10-17) with one of our scholarship recipients who becomes a trusted ally for these kids facing the challenges of childhood cancer. The mentors are an experienced guide, trusted ally, delete and caring role model in helping face the challenges of childhood cancer.
In addition to these programs, many parents struggle with how to manage school issues when their child is in treatment. The following information can help you with this important matter.
Enroll in the school of flexibility
Parents may feel an instinct to shelter their child while they are sick, but kids should attend school whenever possible. Research shows that long-term survivors who attended school during treatment had better social skills, more self-confidence and were also less likely to have academic problems than kids who were in tutoring programs at home. However, many children with cancer have to miss school frequently due to treatment, complications, or a compromised immunity. For this reason, many schools offer homebound tutoring or private tutoring to students who must be absent from school over an extended period.
If your child does a homebound program, they would remain enrolled in school and be expected to return as soon as they are able. Most students benefit from intermittent home tutoring, meaning they attend school when they are able, and are tutored at home when they are not. This process can be discussed and arranged through a school counselor. Intermittent instruction, however, may not be right for every child or available in every district.
Sometimes, your child may need to be hospitalized. While he is inpatient, the hospital’s educational coordinator can help with academics. Many coordinators will also help when your child is outpatient.
Missing school without missing out
Unfortunately, by missing school, kids also miss the important socialization lessons that school provides. There are ways to help your child stay involved while they are at home.
- Attend special days and parties. Work with the school to allow your child to be there for activities like Halloween, Valentine’s Day or classroom functions.
- Interact with classmates. Encourage friends to send cards, letters and pictures. You can even set up a collection box at school to make it easy for people to stay in touch with your child. Email is another great way to keep in touch.
- Help your child keep in touch through social media or other free websites. You can set up a Facebook account and regularly post updates on their progress. Please note: Facebook does not allow young children to have their own account so you will need to closely manage and monitor any activity. A personal website can be established on www.caringbridge.org to stay connected with family and friends.
- Use video conferencing to interact. Skype is a free video conferencing service that’s easy to use. Web cameras are becoming a standard component of many computers. Web cams can also be purchased separately and are an inexpensive and simple way to add video conferencing to your existing system.
- Invite friends to visit and play. It’s important your child continue being a kid.
Back to school-Sometimes the school needs educating
Before returning to school, discuss these things with teachers and your principal.
- Your child’s health in detail. Talk about your child’s diagnosis, treatment plan, as well as low blood counts and your child’s risk of infection.
- Central line issues. Tell them if your child has a Port-a-cath or Broviac.
- When to contact you. Stress the importance of calling you if your child has a fever and of informing you if anyone in school has contracted an infectious disease such as chicken pox.
- Any immunization restrictions. Discuss with the school nurse what is expected if there is an outbreak of a disease for which your child has not been adequately immunized.
- Future absences. Talk about who will pick up and return schoolwork when your child is absent from school.
- Accommodations for your special needs. Consider whether your child will need permission or a special pass to go to the nurse or restroom when necessary.
- Who will administer your child’s medication at school, if needed.
- If there are issues preventing your child from completing assignments on time. Mention if there are side effects of treatment or if your child has chronic fatigue.
- If there are areas in which your child is falling behind. Set up tutors if necessary.
- Arrangements for your child’s condition. Discuss if there are activities your child cannot participate in or if extra time will be needed to move between classrooms.
- Class room seating. Talk to teachers about your child’s placement in the classroom if they need to accommodate for hearing and visual problems.
- Side effects caused by treatment. Find out if the school is equipped for a wheelchair or walker and if handicapped parking spots are available. Discuss whether special permission is required to wear a hat or a scarf to school.
Know the signs of learning problems
Sometimes, childhood cancer survivors develop difficulties in school as a result of treatment. Academic problems can appear immediately or not show up for several years. A 504 Plan is part of the Rehabilitation Act of 1973 and requires schools to meet the needs of students with disabilities.
When your child is first diagnosed, consider requesting a 504 Plan and maintain it through high school. Resources are easier to access when the plan is already in place. Keep in mind; studies on childhood cancer are continually revealing new facts about educational late effects. Childhood cancer is rare and many educators are not familiar with the late effects on learning. Children who are struggling to learn may display difficulties with:
- Handwriting or spelling
- Reading comprehension
- Remembering math facts (such as multiplication tables) or using math calculations correctly when solving problems
- Processing, copying or writing information after seeing it
- Short-term memory
- Planning and organizing
- Completing tasks on time, both in class and at home
Additional information can be found here:
Cancer Treatment May Impact School: How to Convince Your Child’s Teacher
Presented on: 09/28/10 (1hr in length)
Presenter: Mindy Aylward, RN, BSN, CPON
From: Akron Children’s Hospital, Oncology Outreach Educator
Optimizing the Lifelong Health of Childhood Cancer Survivors: School Issues
Presented on: 4/20/11 (1hr in length)
Presenter: Daniel Armstrong PhD.
From: Mailman Center for Child Development, University of Miami Miller School of Medicine
IDEA and Special Education
There are federal guidelines in place to ensure that every child’s special educational needs are met. The Individuals with Disabilities Education Act (IDEA) states that “children with disabilities” are entitled to a “free appropriate public education which includes special education and related services to meet the unique needs of all disabled individuals between the ages of 3 – 21.
Related services covered under IDEA include physical, occupational and speech therapies, counseling, sign language interpretation and providing classroom aides. IDEA lists several categories of disabilities and impairments, but most children with cancer are eligible under the “other health impairment” category.
Download our Parents Guide, “The Other Side of the Mountain.”
Additional information can be found here:
Advocating for School Support: For the Parents of Childhood Cancer Survivor
Presented on: 10/25/11 (1hr in length)
Presenters: Thurma Deloach, PhD; Leslie Johnson, MA; Julie Tadros, RN, Staff from the Kirkwood, MO School District
For more information about IDEA and school interventions:
National Rehabilitation Information Center
Provides direct, personal and high-quality information to the disability and rehabilitation community. This website offers online publications, searchable databases and timely reference and referral data.
National Center for Learning Disabilities
Conducts educational programs, provides services, and recommends instructional activities to aid those with learning disabilities.