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@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 Learned:“Strength 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 Learned:Sometimes 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 Learned:We 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 Learned:Belonging makes each of us feel so complete.

18. Lesson 9: It’s Okay to Cry

19. Lesson Learned:We 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. Physical Cognitive Social/Emotional Spiritual Academic Challenges

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. 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 Major Concerns of Teachers/Parents

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 student’s ability to access learning in the educational setting because of a learning problem, behavioral issue, or health-related condition.

38. Self-care Manual tasks Walking Seeing Hearing Speaking Sitting Thinking Learning Breathing Concentrating Interacting Working What are considered “Major Life Activities?”

39. 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 Examples of 504 Disabilities

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 living…and 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. 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 What constitutes a “disabling condition”?

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.