Return to flip book view

Childhood Cancer Education Toolkit ASK Childhood Cancer Foundation 1Jer’Niya, 13Acute Promyelocytic LeukemiaFor Parents and CaregiversCHILDHOOD CANCERTOOLKITEDUCATION

2 Childhood Cancer Education Toolkit© 2024 ASK Childhood Cancer Foundation (ASKCCF). All rights reserved. Developed by: Alma Morgan, Associate Director of EducationThis publication was supported by the Grant or Cooperative Agreement, Number NU58DP006324, funded by the Centers for Disease Control and Prevention. Its contents are solely the responsibility of the authors and do not necessarily represent the ocial views of the Centers for Disease Control and Prevention or the Department of Health and Human Services. 2024 revisions funded by the Virginia Department of Health.POST-TREATMENT CHALLENGES05 Most Common Physical Challenges09 Most Common Cognitive Challenges12 Most Common Social & Emotional Challenges15 Most Common Job-Readiness Challenges04 What’s in Your Education ToolkitTable ofCONTENTSTOOLS FOR FAMILIES AND SCHOOLS17 School Health Plan18 Education Plan25 Classroom In-Service26 Tips on Supporting Your Child’s School Success

Childhood Cancer Education Toolkit ASK Childhood Cancer Foundation 305 Most Common Physical Challenges09 Most Common Cognitive Challenges12 Most Common Social & Emotional Challenges15 Most Common Job-Readiness Challenges04 What’s in Your Education ToolkitTreatment for childhood cancer can affect your child’s ability to think, remember, move, play, communicate, and socialize. Challenges that come up after treatment are called “late eects.” Some late eects may come up right away. But it’s also common for children and youth to experience new challenges as they get older and school gets harder.Even so, administrators, teachers, and school nurses may not be familiar with how treatment for cancer can change behavior and learning.If you have questions about this guide or your next steps, contact ASK Childhood Cancer Foundation to talk to an Education Navigator. You are not alone!How to identify and share your child’s unique needs with the schoolStep-by-step instructions for creating a return-to-school plan with your school administrators and teachersLinks to additional resources to help ease the transitionThis toolkit shows you how to work with schools to meet your child’s educational needs after a childhood cancer diagnosis. Inside, you’ll find:From preschool to college and beyond, 2 out of 3 students will have at least one late effect after cancer treatment.WHAT’S INSIDE

4 Childhood Cancer Education ToolkitYou! You know your child better than anyone. Speaking up about their needs and building strong partnerships between the medical team, school team, and your family will improve your child’s experience at school.School Health PlanA School Health Plan helps school employees learn about your child’s diagnosis, medications that may need to be given at school, procedures that may need to be addressed at school, and accommodations needed in the school setting for the medical condition. Each school division has its own way of documenting this information. Learn more on page 17.Educational PlanEducational plans come with legal protections to make sure schools are providing what your child needs to meet their learning goals. You will work with your child’s school to create the plan together. Two educational plans are available: a 504 Plan and an Individualized Education Program (IEP). Learn more on page 18.Accommodations ListAccommodations are changes that remove barriers and give your child equal access to learning. A list of accommodations that may meet your child’s unique needs in the school setting is on page 22. Classroom In-ServiceAn in-service is an informational session for classmates. It helps classmates and teachers understand the changes they may see when your child returns to school. Changes like hair loss and fatigue are explained in detail so your child feels welcomed back by their peers.Your Education ToolkitWHAT’S INSIDE

Childhood Cancer Education Toolkit ASK Childhood Cancer Foundation 5After treatment, students may experience small or big changes in how their body moves and feels. Some are easy to see, and some are not. Physical challenges can have a big impact on the school day and their studies.Most CommonPHYSICALCHALLENGESFatigueUnsteady gaitMuscle weakness & low staminaHearing & vision lossNeuropathyGross & fine motor skills deficitsMood swingsNausea & vomitingAltered physical appearancePainAT A GLANCE:Harry, 11B-Cell Acute Lymphoblastic Leukemia

6 Childhood Cancer Education ToolkitThis chart shares some examples of challenges and the kinds of accommodations that may help.DefinitionsChallenge What it meansPossible accommodationsFatigue Fatigue is a side eect of chemotherapy and radiation that can last for an indefinite period of time following treatment.• Attend school for a “partial day” (morning or afternoon classes)• Rest period during the school dayMuscle weakness and low staminaYour child may not have the strength or energy they typically have. It can come and go depending on the amount of activity the child can handle during the school day.• Participate in physical activities as tolerated• Alternative activities for PE class and recess • Extra time to walk to their next classNeuropathy (pain or numbness in hands or feet)Neuropathy is weakness, pain, or numbness in the hands or feet that impact walking, climbing stairs, completing fine motor skills tasks, or writing for a long time. Pain and discomfort can interfere with attention, concentration, and stamina.• Modified or shortened assignments• Assistive technology when writing long assignments• Elevator passMood swings Taking steroids as part of treatment can aect sleep, appetite, and the ability to regulate emotions. Children may be extremely tearful, irritable, and sad. They may have “temper tantrums” or emotional outbursts.• Additional snacks at school when taking steroids• Rest period during the school day

Childhood Cancer Education Toolkit ASK Childhood Cancer Foundation 7Challenge What it meansPossible accommodationsAltered physical appearance (changes in how they look)Children and teens are often sensitive to visible changes such as: • Thinning hair/hair loss• Weight loss or gain• Scarring from surgery and other medical procedures• Permission to wear a hat or scarf• Desk suitable for body size• Private shower stall to change clothes for PE classUnsteady gait (trouble walking or balancing)Recovering from brain tumors can make it hard to walk and stay balanced on their feet.• Wheelchair, walker, or cane• Personal aide or assistance from an adult while moving around• Permission to leave class early to avoid crowded hallwaysHearing and vision loss Hearing and vision loss can occur during or after treatment.• Evaluation by school division coordinators for visual and hearing challenges• Seat or desk close to the instructor“The side effects of the chemo cause me to fall asleep in class because of fatigue. I am not able to go up the stairs because of the muscle aches and the pressure it brings to my head. These are just a few problems I have as a high school student.” - Brain Cancer Survivor

8 Childhood Cancer Education ToolkitChallenge What it meansPossible accommodationsGross and fine motor skills deficits“Gross motor skills” involve the large muscles of the body. Children with gross motor skill challenges can have diculty with running, hopping, skipping, riding a bicycle, carrying a heavy backpack, and everyday skills needed for dressing. “Fine motor skills” involve the small muscles in the hands. Children with fine motor skill challenges may have diculty with everyday actions like buttoning their clothes, tying their shoes, opening food items, and even feeding themselves. Academic skills are aected by fine motor skill deficits due to diculty with handwriting, coloring, cutting, and construction (lego bricks, puzzles, etc.).• Extra support to complete physical and academic tasks• Evaluations by an occupational therapist or physical therapist assigned to the school• Assistive technology evaluationNausea and vomiting An upset stomach is a common side eect of medications and treatment, especially chemotherapy.• Late arrival to school to accommodate morning sickness• Visit the school nurse• Easy access to snacks and water during the school dayPain Pain can make it hard for your child to focus, participate in activities, and keep up with their studies.Chronic pain is associated with many types of childhood cancer. • Regular visits to the nurse for medication• Use of a heating pad• Special seat or desk chair• Rest period

Childhood Cancer Education Toolkit ASK Childhood Cancer Foundation 9“Cognitive” means the thinking activities of the brain. Cognitive skills are reading, learning, remembering, logical reasoning, and paying attention. Gaps in these areas can be hard to spot in children. Here are some common examples.Most CommonCOGNITIVECHALLENGESSlower processing speedShort-term memory lossUnable to focus or concentrate for long periodsPoor organizationHard to multi-taskVisual-spatial challengesDifficulty with word retrievalAT A GLANCE:Shyann, 10Rhabdomyosarcoma Stage 4

10 Childhood Cancer Education ToolkitThis chart shares some examples of challenges and the kinds of accommodations that may help.DefinitionsChallenge What it meansPossible accommodationsSlow processing speed Your child may need a few extra minutes to answer questions, share their thoughts, or complete their work. Your child may feel anxious or nervous about how long it takes them to answer. They can be afraid of being called on in class and not having enough time to respond.• More time to respond in class• Questions provided in advance or in writing• Extended time to complete classwork, quizzes, and tests• Shortened assignmentsUnable to focus or concentrate for long periodsYour child may experience attention and concentration challenges because of their medications. Pain and discomfort can cause distraction.• Extra breaks• Gentle reminders to help them focusPoor organization “Executive functioning” is the ability to plan, organize, and complete tasks. Treatment can cause changes in a your child’s executive functioning abilities, and make it hard for them to stay organized. • Extra help from parents, teachers, and case managers to:• Write assignments in their agenda book• Get ready for tests and projects• Prepare for upcoming tests and projects• Monitor make up of missed assignments and due datesShort-term memory loss After treatment, it can be hard for your child to remember things that they read, heard, or saw recently. For example, your child may know their spelling words the night before but fail the quiz the next day.• More time to complete assignments and take tests• Word bank

Childhood Cancer Education Toolkit ASK Childhood Cancer Foundation 11Challenge What it meansPossible accommodationsDicult to multi-task It may be hard for your child to process in-depth information or keep up with multi-step instructions.• Spoken and written instructions with one or two steps at a time• Teachers and parents to check that the student understands the tasks• Index cards to outline each stepVisual-spatial challenges Visual-spatial trouble aects reading, math, and physical activities.“Visual-spatial processing” is the ability to tell where objects are in space. It’s how we know where to move our hands to catch a ball and how we read a math equation in the right order. It’s also how we can tell the dierence between a W and an M.• Visuals, manipulatives (objects they can hold, move, and feel), and hands-on activities to help strengthen these skills Diculty with word retrieval Your child may know what they want to say but have diculty finding the words and speaking. It can get harder to find the right word when your child is tired or under stress. It may seem like the student doesn’t know the answer, even though they do.• Extra time to put their thoughts together and share them out loud• A math formula bank or word bank“In school, my cancer had a big impact on me. It took me much longer to understand concepts. I had to have things repeated a couple of times where other students understood right away.”- Leukemia Survivor

12 Childhood Cancer Education ToolkitSocial and emotional challenges can come and go for children facing cancer diagnosis and treatment. Here is a list of the most common.Most CommonAT A GLANCE:SOCIAL & EMOTIONAL CHALLENGESMissing out on playgroups, sports, and other activities Loss of contact with friends and peers Variation in maturity levels Desire for independence Need for acceptance Finding a social group in which to belong Search for normalcy Feelings of being different Turmoil of emotions including sadness, fear, guilt, anger, worry, anxiety, loss and grief Aubrey, 8T-Cell Lymphoblastic Leukemia

Childhood Cancer Education Toolkit ASK Childhood Cancer Foundation 13SOCIAL & EMOTIONAL Here are some ways the school can help with social challenges:Create a safe space in the school building. Children and teens returning to school need a place to go when feeling anxious, sad, afraid, or angry. Identify a go-to support person. A special teacher, coach, school nurse, or counselor can be the one person the child turns to when facing challenges during the school day. Start a club or support group at the school. Invite the school counselor or other school professionals to lead a group for students with special health care needs or social-emotional issues. These groups can allow students to express their feelings and concerns and let them know they are not alone. Help returning students feel wanted and accepted. Showcasing artwork, performing in the school play, making morning announcements, being an oce aide, or serving as an assistant on a sports team can make a child returning to school feel extra special and help them shine.

14 Childhood Cancer Education ToolkitStudents Also Have Spiritual ChallengesThe diagnosis of childhood cancer provokes many tough questions.Why me? Why do bad things happen to good people?What did I do wrong to deserve this? While they may not be asked out loud in a school setting, it’s important for parents and teachers to think about what else may be making it dicult for your child to give their best.Often, the best thing an adult can do for a child experiencing these challenges is to listen and let them know they are not alone.“It is like a dangerous roller coaster ride with upside-down loops, gravity-defying drops, and steep upward hills. And much like a roller coaster ride, once finished, you look back on it as the scariest, most challenging, yet somewhat vitalizing time, and come away a stronger and wiser person.” - Robyn Dillon, Licensed Clinical Social Worker for Pediatric Hematology/Oncology

Childhood Cancer Education Toolkit ASK Childhood Cancer Foundation 15Most CommonPhysical, cognitive, social, and emotional challenges impact your child’s school and job success. In fact, many challenges are not identified until a child returns to school and everyday activities. It’s critical to work closely with the school to help your child stay on track with education, career, and job-readiness goals as they move forwardin school.AT A GLANCE:Curriculum and scheduling District and state testingType of diplomaSAT & ACT testingCareer goalsTransition goalsCollege or job-readiness planningIt can feel dicult to return to school, but studies have shown that the longer your child stays out of school, the more likely they are to experience separation and social anxiety. That’s why it’s important to encourage your child to go back as soon as their doctor gives them permission to do so.Tecumseh, 12T-Cell Acute Lymphoblastic Leukemia (ALL)JOB-READINESSCHALLENGESSCHOOL &

16 Childhood Cancer Education ToolkitFor elementary school students:1. My child may have a partial school day. Will the core subjects (math, science, reading, writing) be taught while they are in class, or will they need homebound services?2. What can we do to help my child keep up if they are hospitalized?3. What are the options for district and state-level testing like SOLs? Should my child take them or avoid the stress?4. What’s the best way to communicate about new challenges that may come up when my child is in school? Can we meet every 3-4 weeks to discuss their progress?For middle school or high school students:1. Which courses would best fit my child’s needs, interests, and goals?• Should my child have a study hall due to possible fatigue? • Should my child be taking AP classes? If so, how many?• Are there course requirements that can be met in the summer to reduce their workload?2. Is my child going to attend full-day or partial-day? Will homebound services be needed?3. What options do we have for district and state-level testing? • How many verified credits does my child need to graduate? How many SOL tests does my child have to take?• What is the schedule for SAT or ACT testing? When should my child take them?4. What career goals does my child have?• What are my child’s strengths and weaknesses?• Should my child be on track for a standard, advanced, or applied studies diploma? What is required for each?• Is my child college-bound? What are vocational/trade options?Here are questions to talk over with your school counselor before returning to school.TO ASKQUESTIONS

Childhood Cancer Education Toolkit ASK Childhood Cancer Foundation 17A School Health Plan gives information and instructions to the school team so everyone is on the same page about what your child needs during the school day.Before your child goes back to school, you need to meet with the school nurse to obtain a copy of the School Health Plan and then have your child’s physician complete the plan. SCHOOLHEALTHPLANDiagnosis and medical condition All medications to be given at school A School Health Plan should include:Instructions for medical procedures that will be performed at schoolFeeding and nutritional needs at school Physical accommodations needed in the school setting Information regarding emergency contacts and procedures SCHOOL HEALTH PLANSabina, 17Hodgkin Lymphoma

18 Childhood Cancer Education ToolkitEDUCATIONALPLANAn educational plan is an agreement between parents and the school to ensure your child gets what they need to meet their learning goals. These plans come with legal protections so that students of all abilities have access to quality education.Most children and teens going to school after a cancer diagnosis need an Educational Plan to accommodate the late effects and challenges associated with treatment. Remember that 2 out of 3 students have at least one late eect after cancer treatment.Individuals with Disabilities Education Act (IEP)There are two plans you might consider:Section 504 of the Rehabilitation Act of 1973 (504 Plan)Katia, 16Osteosarcoma

Childhood Cancer Education Toolkit ASK Childhood Cancer Foundation 19What is Section 504? Section 504 is a civil rights law that prohibits discrimination based on disability or impairment. It is focused on accommodations that can help your child.How is “disability” defined for a 504 plan? When a person has a mental or physical impairment that substantially limits one or more major life activities.Major life activities that may be impaired include but are not limited to: Self-care Thinking Learning Manual Tasks Hearing Speaking Walking Breathing Concentrating Interacting Seeing Sitting Section 504 of the Rehabilitation Act of 1973 How is an “impairment” defined for a 504 plan? • Any disability, long-term illness, or disorder that substantially reduces or lessens a student’s ability to access learning in the educational setting because of a learning problem, behavioral issue, or health-related condition. • When a person has a record of such an “impairment” or is regarded as having such an impairment.• The clinic or hospital dictation can serve as the record of the impairment. Parents need to obtain the dictation from the clinic or hospital before attending the school meetings.

20 Childhood Cancer Education ToolkitIndividuals with Disabilities Education Act (IDEA)What is the Individuals with Disabilities Education Act (IDEA)? IDEA is a federal law that ensures that all children with a disability get a free, appropriate public education that is tailored to meet their individual needs.Each child who is found eligible for special education services under IDEA has an Individualized Education Program (IEP) that is written specifically for his or her unique learning needs. It provides direct instruction in and out of the classroom.There are numerous “handicapping conditions” under IDEA. Children diagnosed with childhood cancer who need special education services often qualify under the handicapping condition of “Other Health Impairment.” Student Evaluations for an IEPChildren must be evaluated to determine if they qualify for services under IDEA. • The process for evaluation can take a long time. The school district has 65 days to complete the evaluations. Evaluations can include: Medical Psychological Educational Social History Speech Language Physical Therapy Evaluation Occupational Therapy Evaluation Assistive Technology Evaluation Classroom ObservationThe Virginia Department of Education (VDOE) provides Evaluation and Eligibility information here: https://www.doe.virginia.gov/programs-services/special-education/evaluation-and-eligibility. There, you can download the “Parent’s Guide to Special Education” PDF and other resources.

Childhood Cancer Education Toolkit ASK Childhood Cancer Foundation 21It is hard to think about your child having a “disability” now or in the future.However, childhood cancer is a health impairment.Even if your child is in advanced classes, getting good grades, or seems fully “recovered,” some things can still be dicult. An educational plan can help them stay on track.“Accommodations” are changes that remove barriers and give your child equal access to learning. The list on the following page will give you an idea about what might meet your child’s unique needs. This tool will help you and your school partners discuss options during your School-Based Team Meeting.The following checklist can be used on the 504 Plan or IEP when your child exhibits physical, cognitive, social, and emotional challenges.HELPFULACCOMMODATIONSCaelan, 4B-Cell Acute Lymphoblastic Leukemia (ALL)

22 Childhood Cancer Education Toolkit Permission to carry a water bottle throughout the school day Mid-morning and afternoon snack breaks Bathroom privileges when needed Rest period when needed Use of a 2-way agenda book in which parents and teachers can communicate on a daily/weekly basis Clarification of both oral and written directions Hard copy of notes, presentation slides, and study guides Scribe to take notes Chunking assignments and tests into small parts Extended wait time for responses due to slower processing Extended time to complete assignments and tests Repeat or rephrase key information of study unit to allow for additional processing Preferential seating, free of distractions Use of visual aids and manipulatives when learning new tasks Use of assistive technology to address reading and writing diculties Divider or study carrel to block visual distractions when completing tests, quizzes, and individual class assignments Frequent breaks during lengthy class periods and assignments to mitigate fatigue and improve mental stamina Modified workload with emphasis on quality versus quantity Study guides or bank of possible questions at the beginning of each study unit Small group or individual setting for testing, quiet and free of distractions Teacher prompts and reminders to submit classwork and homework Use of a voice-to-text reader to improve oral reading comprehension Use of noise-canceling headphones to reduce demands on sustained attention Use of multi-modality learning in which auditory, visual, and tactile, hands-on activities are incorporated Use of formula bank and word bank to assist with word retrieval and memory issues Exempt from strenuous exercises, contact sports, and long-distance running in PE class Exempt from the Presidential Physical Fitness Testing in the Fall and Spring Participation in physical education activities as tolerated Permission to wear sunscreen and hat when going to recess or PE Permission to wear a hat or scarf due to hair loss or feelings of discomfort Allowed to leave class 3-5 minutes early to avoid the crowded hallways Peer buddy when transitioning from class to class Elevator pass when school has multiple floors Locker assignments close to classes Parking space close to the school entrance Partial day school with intermittent homebound services when unable to attend for a full day It would help my child to have:

Childhood Cancer Education Toolkit ASK Childhood Cancer Foundation 23Step 1: Call the school and request a School-Based Team Meeting. • A request for a school-based team meeting can be verbal or written. We recommend sending your request for the meeting in writing so there is clear documentation. The school has ten (10) days to respond with a meeting date. • Parents should request that the school nurse and all teachers working with the child attend the meeting.• Invite your ASK Education Support Navigator.Step 2: Gather important documents from your child’s doctor before the School-Based Team Meeting.• Contact the school nurse to obtain a copy of the school health plan. Take the plan document to your child’s doctor to fill in the plan information.• Obtain a copy of the latest clinic dictation or medical summary from your doctor so that the school will have documentation of diagnosis, treatment, and other pertinent medical information. Step 3: Review this guide to prepare for your School-Based Team Meeting.HOMEWORKGet Ready to Meet With Your SchoolPARENTNairoby, 8Optic Nerve Glioma

24 Childhood Cancer Education Toolkit“The school brings a team of people to the meetings. You, as a parent, sometimes feel alone or not heard. It was so amazing to have the Education Support Navigator on my side to help explain the medical needs of my child. Together, we made a plan that was well thought out and we had a much better outcome.”- ASK ParentParent HomeworkStep 4: Attend the School-Based Team Meeting and discuss the following: • Child’s diagnosis • Child’s treatment plan• Side eects or challenges (physical, cognitive, social, & emotional) • How the side eects of treatment and challenges have impacted learning • What accommodations may be needed in the school setting • What evaluations may be needed to better serve the child• If the school-based team recommends that additional evaluations are required, then they have sixty-five (65) business days to complete all evaluations. • After the evaluations are completed, the team will determine if the student is eligible for accommodations under a 504 Plan or special education under an Individualized Education Program (IEP). They then have up to 30 days to write an IEP or 504 Plan. • Whether or not a class in-service is needed to answer classmate and teacher questions, it can help your child feel more comfortable when they go back to school. • Information regarding emergency contacts and procedures

Childhood Cancer Education Toolkit ASK Childhood Cancer Foundation 25Classmates need to know why their friend is frequently absent, is allowed to wear a hat, cannot play contact sports, or needs a rest period. An in-service is a lesson or activity to help your child and their classmates feel more comfortable. It will:• Answer curious questions• Make children less afraid and more comfortable• Share ideas on how to be helpful and a good friendThe ASK Education Support Navigator, hospital social worker, or child life therapist at your child’s treatment center may be the one to lead the in-service. A teacher, school counselor, or school nurse at your child’s school is also a good option.Here is what could be included in an elementary-age in-service: • A short description of the diagnosis and treatment is always a good way to begin, followed by pictures, diagrams, and big words like “chemotherapy” on the board. • The leader may use puppets to show where the port-a-cath is placed and how the medication is given. • Next, side eects such as hair loss, fatigue, and low stamina can be discussed.• Classmates and leaders can discuss how to be a good friend.Resources such as puppets, video presentations, and medical devices are helpful when doing an in-service.In-service content should be age-appropriate for middle and high school students.CREATE A WELCOMING ENVIRONMENT WITH ACLASSROOMIN-SERVICE

26 Childhood Cancer Education ToolkitYou know your child better than anyone—even the medical providers and school sta. As your child reaches their learning goals, they will still need your support. Here are three things to remember:SUPPORTINGTIPS ONYOUR CHILD’S SCHOOL SUCCESSStart teaching self-advocacy skills at a young age.• Encourage your child to start early in thinking and learning about who they are.• Help your child learn his or her strengths and challenges. • Teach your child to communicate eectively with teachers, medical sta, friends, and others about their strengths and challenges. They should never be ashamed or embarrassed to talk openly and freely about their diagnosis, treatment, challenges, and needs. Through each school transition, stay involved. Whether to middle school, high school, college, or a new job, parents may need to hold their child’s hands a little longer following childhood cancer diagnosis and treatment. Straddling the line between childhood, adolescence, and adulthood can be scary.ASK will always be here to support your family.We like to say, “Once an ASK kid, always an ASK kid.” This means you can always depend on us for guidance and support during your child’s treatment, throughout their transition back to school, and in their college and job readiness as they enter adulthood.Please always feel free to call your region’s Education Support Navigator for help when you need it. You can find their contact information at askccf.org.

Childhood Cancer Education Toolkit ASK Childhood Cancer Foundation 27“The education toolkit helped explain medical things that my child was going through. It included some things I didn’t even know affected him at school. It was great to give a brochure to the school as well. It helped explain my son’s situation in an easy-to-follow way.” - ASK ParentNikola, 5B-Cell Acute Lymphoblastic Leukemia (ALL)Nikola, 5B-Cell Acute Lymphoblastic Leukemia (ALL)

28 Childhood Cancer Education ToolkitVisit askccf.org to download the digital version of this toolkit and explore our other educational resources.