Lessons Learned from Children with Cancer:

1
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
• amorgan_at_mcvh-vcu.edu
• Cell 804-514-7897
• Office 804-628-4679

2
Lesson 1 The Need for Normalcy
3
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.
4
Lesson 2 Strength
5
Lesson LearnedStrength is something from
within that allows us to persevere when faced
with major challenges and turmoil in life.
6
Lesson 3 Kids Have Worries, Too
7

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

8
Lesson 4 Take Time and Detour
9
Lesson LearnedSometimes we must...

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

10
Lesson 5 Not Until My Work Is Completed
11

• 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.

12
Lesson 6 Pride, Attitude, and Perseverance
13
Lesson LearnedWe are all winners when we have
given it our very best.
14
Lesson 7 Silent Suffering
15
Lesson Learned Many times we are not aware of
the suffering because there are no vivid signs
such as tears and verbal complaints.
16
Lesson 8 Belonging
17
Lesson LearnedBelonging makes each of us feel
so complete.
18
Lesson 9 Its Okay to Cry
19
Lesson LearnedWe are all human, and are not
emotions part of being human?
20
Lesson 10 The Gift
21
Life Lesson We all have gifts to share with
humanity, and we should never stop asking, What
else can I do to help?
22
Lesson 11 We All Have Challenges
23
Challenges

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

24
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

25
Cognitive Challenges

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

26
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

27
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

28
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

29
Major Concerns of Teachers/Parents

• Lack of Information
• Teacher Skills
• Absenteeism
• Limited Resources
• Communication
• Student Health
• Impact of Illness
• Peer Relationships
• Shiona, S.(2004). Positive Interventions for
  Children with Chronic Illness Parents and
  Teachers Concerns and Recommendations.
  Austrailian Journal of Education.

• Absenteeism
• Student Health
• Peer Relationships
• Impact of Illness
• Separation Anxiety
• Teacher Skills
• Teasing and Bullying

30
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

31
When a Child with Cancer or a Chronic Illness
Enters theSchool 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

32

• Child Study Team will determine what evaluations
  are needed.
• Medical
• Psychological
• Educational
• Social History
• Speech/Language
• Occupational Therapy
• Physical Therapy

33
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

34
What educational plans are available?

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

35
What is Section 504? It is a civil rights statue
that prohibits discrimination based upon
disability.
36

• 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

37
What is defined as an impairment?Any
disability, long-term illness, or disorder that
substantially reduces or lessens a students
ability to access learning in the educational
setting because of a learning problem, behavioral
issue, or health-related condition.
38
What are considered Major Life Activities?

• Self-care
• Manual tasks
• Walking
• Seeing
• Hearing
• Speaking
• Sitting

• Thinking
• Learning
• Breathing
• Concentrating
• Interacting
• Working

39
Examples of 504 Disabilities

• Allergies
• Asthma
• ADHD-Attention Deficit Hyperactivity Disorder
• Behavioral Issues
• Childhood Cancer
• Crohns Disease
• Cystic Fibrosis
• Diabetes

• Juvenile Arthritis
• Heart Disease
• Hemophilia
• Muscular Dystrophy
• Physical Disabilities
• Sickle Cell Anemia
• von Willebrand Disease
• Traumatic Brain Injury

40
What is IDEA? Individuals with Disabilities
Education Act
41
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.
42
IDEA 2004

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

43
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 livingand to ensure that the rights
  of children with disabilities and parents of such
  children are protected.

44

• 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

45
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

46

• Child Study Team will determine what evaluations
  are needed.
• Medical
• Psychological
• Educational
• Social History
• Speech/Language
• Occupational Therapy
• Physical Therapy

47

• 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

48

• 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

49

• 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

50
Personal Opinion

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

51
Explore How the Chronic Health Condition Impacts
Learning

• Neuro-Psychological Testing

52
Neuro-Psychological Testsare
specifically designed tasks used to measure a
psychological function known to be linked to a
particular brain structure or pathway.
53
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

54
Functional Domains

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

55
Why is neuro-psych testing crucial for
chronically-ill children?

• It identifies the strengths and weaknesses of the
  child/teen.

56
Identifying Ones Strengths and Weaknesses
Leads toSelf Advocacy
57
Self-advocacy is understanding your
-Strengths and Needs-Identifying your personal
goals-Knowing your legal rights and
responsibilities-Communicating these to others
58
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

59
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 soSCARY!

60
Transition

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

61
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

62
Transition Brings Many Emotions

• Anxiety
• Fear
• Excitement
• Happiness/Sadness
• Confusion
• Anger
• Frustration
• Hope
• Relief
• Tranquility

63
Programs That May Help!
64
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

65
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.

66
and Many More

• School Video Project
• Summer Enrichment Program
• Monthly Discussion Groups
• Retreats
• Transition Forums
• Graduation