Lessons Learned from Children with Cancer: A Comprehensive Look at Challenges, Educational Strategies, and Interventions Alma M. Morgan, M.Ed.

Educational Consultant Virginia Commonwealth University Medical Center Pediatric Hematology/Oncology [email protected]

Cell: 804-514-7897 Office: 804-628-4679

Lesson 1: The Need for Normalcy

Lesson Learned: We all strive for school, work, family, friends, socialization, community involvement, etc. When any of these are taken away, we feel a loss.

Lesson 2: Strength

Lesson Learned: “Strength is something from within that allows us to persevere when faced with major challenges and turmoil in life.”

Lesson 3: Kids Have Worries, Too

Lesson Learned: Children, even the youngest of them, sometimes have worries too big to carry alone.

Lesson 4: Take Time and Detour

Lesson Learned: Sometimes we must...

Throw-away the schedules and timetables Learn to be flexible Take time to listen Show support when needed

Lesson 5: Not Until My Work Is Completed

Lesson Learned: We all have a bucket list! Our children and teens are sometimes willing to share their bucket list, if we only take the time to listen.

Lesson 6: Pride, Attitude, and Perseverance

Lesson Learned: We are all winners when we have given it our very best.

Lesson 7: Silent Suffering

Lesson Learned: Many times we are not aware of the suffering because there are no vivid signs such as tears and verbal complaints.

Lesson 8: Belonging

Lesson Learned: Belonging makes each of us feel so complete.

Lesson 9: It’s Okay to Cry

Lesson Learned: We are all human, and are not emotions part of being human?

Lesson 10: The Gift

Life Lesson: We all have gifts to share with humanity, and we should never stop asking, “What else can I do to help?”

Lesson 11: We All Have Challenges

Challenges • Physical • Cognitive • Social/Emotional • Spiritual • Academic

Physical Challenges • Fatigue • Muscle Weakness/Low Stamina • Neuropathy (hands and feet) • Nausea and Vomiting • Mood Swings • Altered physical appearance • Hearing and Visual Loss • Gross and Fine Motor Skill Deficits

Cognitive Challenges • Short-term memory loss • Difficulty with word retrieval • Slower processing skills • Poor organization • Difficulty multi-tasking • Inability to focus • Poor concentration

Social/Emotional Challenges • Lack of exposure to play groups and peer interaction • Variation in maturity levels • Feelings of sadness, guilt, and worry • Finding a social/interest group in which to belong • Feeling different

Spiritual Challenges • Why me?

• What did I do wrong to deserve this?

• Where is God in all this?

• Do I deserve to live this way?

• What is my quality of life?

• Loss, Grief, and Bereavement Issues

Academic/Vocational Challenges • Curriculum and Scheduling • Types of Diploma • Standards of Learning • State and District Assessments • SAT and ACT Testing • Career Goals • College or Vocational Training • Transition Issues

• • • • • • • • Lack of Information Teacher Skills Absenteeism Limited Resources Communication Student Health Impact of Illness Peer Relationships Major Concerns of Teachers/Parents • • • • • • • Absenteeism Student Health Peer Relationships Impact of Illness Separation Anxiety Teacher Skills Teasing and Bullying

Shiona, S.(2004). Positive Interventions for Children with Chronic Illness: Parents’ and Teachers’ Concerns and Recommendations. Austrailian Journal of Education.

How Can Parents and Educators Work Together ?

• By sharing an understanding of the illness and how it impacts the student • Explore school health plans and educational plans • Investigate how neuro-psychological testing and career assessments can assist in educational planning • Educate Classmates • Help child or teen develop advocacy skills • Assist with transition periods

When a Child with Cancer or a Chronic Illness Enters the School or Classroom At a meeting among parents and school staff, share the following: • Diagnosis • Treatment • Side Effects • How the illness impacts the child at home and at school • Refer to the Child Study Team

Child Study Team will determine what evaluations are needed.

•Medical •Psychological •Educational •Social History •Speech/Language •Occupational Therapy •Physical Therapy

Why is the school health plan crucial?

• Describes the chronic illness • Lists medications given at school • Outlines medical procedures • Lists accommodations that are needed for the medical condition

What educational plans are available?

• Section 504 of the Rehabilitation Act of 1973 • Individuals with Disabilities Education Improvement Act (IDEA 2004)

What is Section 504?

It is a civil rights statue that prohibits discrimination based upon disability.

What constitutes a “disability”?

•A person who has a mental or physical impairment which substantially limits one or more major life activity.

•Has a record of such an impairment, or •Is regarded as having such an “impairment”

What is defined as an “impairment”?

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.

What are considered “Major Life Activities?”

• Self-care • Manual tasks • Walking • Seeing • Hearing • Speaking • Sitting • Thinking • Learning • Breathing • Concentrating • Interacting • Working

Examples of 504 Disabilities

• Allergies • Asthma • ADHD-Attention Deficit Hyperactivity Disorder • Behavioral Issues • Childhood Cancer • Crohn’s Disease • Cystic Fibrosis • Diabetes • Juvenile Arthritis • Heart Disease • Hemophilia • Muscular Dystrophy • Physical Disabilities • Sickle Cell Anemia • von Willebrand Disease • Traumatic Brain Injury

What is IDEA?

Individuals with Disabilities Education Act

IDEA was formerly known as Public Law 94-142; however, it was reauthorized in 1997 and has recently been revised again. IDEA, Individuals with Disabilities Education Act, is a federal law that provides funding for special education. It provides a “free and appropriate education” to all students who fall within the special education category.

IDEA 2004

• November 17, 2004- Enacted by Congress • December 31, 2004- Passed by the President • July 1, 2005- Law went into effect

Purpose of IDEA 2004

-to insure that all children with disabilities have a free public education that emphasizes special education and related services designed to meet their unique needs and to prepare them for further education, employment, and independent living…and to ensure that the rights of children with disabilities and parents of such children are protected.

Who qualifies for special education services under IDEA?

•Any child 2-21 years of age, inclusive, who has a “disabling condition” which limits his or her progress in the regular classroom •Any child who needs special education or related services to make progress or appropriate strides in education

What constitutes a “disabling condition”?

• Autism • Deaf-Blindness • Developmental Delay • Emotional Disturbance • Hearing Impairment/Deaf • Intellectual Disability • Learning Disabilities • Multiple Disabilities • Orthopedic Impairment • Other Health Impairment • Specific Learning Disability • Severe Disabilities • Speech/Language Impairment • Traumatic Brain Injury • Visual Impairment

Child Study Team will determine what evaluations are needed.

•Medical •Psychological •Educational •Social History •Speech/Language •Occupational Therapy •Physical Therapy

Possible Accommodations to Include on the 504 Plan or the IEP •Student will be allowed to have two sets of books, one for home and one for school •Student will be allowed to wear a hat or scarf due to hair loss •Student will be given permission to carry a water bottle and drink throughout the school day •Student will be given bathroom, guidance, or clinic passes when needed.

•Student will be exempt from all physical education activities requiring strenuous exercises, long distance running, and direct physical contact •Student will be exempt from the presidential physical fitness testing

More Accommodations •Student will be granted permission to wear layered clothing, both in the classroom and in gym class •Student will be granted permission to change gym clothes in a private stall or restroom if needed •Student will be assigned a moderate workload with limited assignments requiring quality versus quantity •Student will be granted extended time to complete classwork, quizzes, homework, and tests •Student will be allowed to leave class 5 minutes early to get to his next class

And More Accommodations •Students will be granted a shortened school day or rest period if needed •Student will be granted a locker close to his or her classes •Student will be assigned a parking space close to the school entrance •Student will be granted special transportation when the bus stop is numerous blocks from the home •Student will be assigned a peer buddy to take notes or scribe if necessary •Student will be kept informed of class activities and school functions •Student will be assigned an intermittent homebound teacher to assist when absent for an extended period of time •Student will be granted extended school year during winter break, spring break, and summer if needed

Personal Opinion All children with a chronic illness should have either a 504 Plan or an IEP.

Explore How the Chronic Health Condition Impacts Learning Neuro-Psychological Testing

Neuro-Psychological Tests are specifically designed tasks used to measure a psychological function known to be linked to a particular brain structure or pathway.

Information in the Neuro-Psych Evaluation • Background History • Presenting Problems • Reason for Referral • Behavioral Observations • Previous Testing History • Previous Psychological Services • Instruments Used for Evaluation • Results of Evaluation/Scoring Tables • Neuropsychological Profile: Performance and Impairment Levels • Summary • Diagnosis • Recommendations

Functional Domains • Attention and Concentration • Academic and language Functions • Learning and Memory • Problem Solving and Reasoning • Visualspacial and Motor Skills

Why is neuro-psych testing crucial for chronically-ill children? It identifies the strengths and weaknesses of the child/teen.

Identifying One’s Strengths and Weaknesses Leads to

Self Advocacy

Self-advocacy is understanding your: -Strengths and Needs -Identifying your personal goals -Knowing your legal rights and responsibilities -Communicating these to others

Teens and Young People Learn to Self-Advocate • Understand the health care condition • Be able to admit to others you have an illness • Be able to communicate about your illness to others • Develop an understanding of your strengths and weaknesses • Be able to vocalize how the challenges pertaining to your illness affect your academic success, career goals, independent living, Etc.

• Anticipate what individual needs are in ech class • Identify supports and/or accommodations that are needed • Meet with teachers to discuss accommodations • Know your rights and the laws that govern your rights • Be willing to compromise when needed • Plan and prepare for the future

Parents, Help Your Child Learn to Self-Advocate • Stay involved with your child as they are getting older • Hold their hands a little longer • Just because they are teens and young adults does not mean they do not need support • Your teen is straddling the line between childhood and adulthood; it is so…SCARY!

Transition The movement from one critical period in life to the next.

Critical Transition Periods • Pre-school to Kindergarten • Elementary to Middle School • Middle School to High School • High School to College/Work • Pediatric to Adult Services • Career Changes • Major Life Changes

Transition Brings Many Emotions • Anxiety • Fear • Excitement • Happiness/Sadness • Confusion • Anger • Frustration • Hope • Relief • Tranquility

Programs That May Help!

In-service for School Staff and Peers • Answers questions • Makes one less curious • Makes one less afraid • Makes one feel more comfortable • Offers helpful hints and suggestions on how to help

Career Assessments help students plan for the future by offering guidance on jobs, college majors, and vocational training based on: • Interests • Abilities • Values *Selecting a college major and future career that focuses on weaknesses opposed to strengths can be detrimental.

and Many More… • School Video Project • Summer Enrichment Program • Monthly Discussion Groups • Retreats • Transition Forums • Graduation