COMMON COGNITIVE CHALLENGES, BY DEVELOPMENTAL STAGES

Each stage of childhood has its own set of expected challenges and behavior within the course of normal development. Being especially aware of these stages can help you distinguish the difficulties related to the additional strain of their illness or their sibling’s illness from those that are normal developmental challenges. Below, we summarize some of the common reactions to an illness or sibling’s illness at various developmental stages.

Infants and Toddlers (0-2 years)
Unable to understand or appreciate details of diagnosis, prognosis and treatment
Sensitive to changes in routine or changes in caregivers
Likely to shift to earlier, less mature behaviors (e.g., fussiness, difficulty with separations or bedtime)
May experience some delays in milestones (language, gross motor, fine motor)

Preschoolers (3-6 years)
Limited ability to appreciate the details of diagnosis, prognosis and treatment
Vulnerable to misunderstanding the reason that illness occurs and may blame themselves (e.g., “I hit my sister and made her sick” or “I disobeyed my parents and that made me sick”)
May require repeated explanations of the same topics
May experience some delays in milestones (language, gross motor, fine motor)
Increased sensitivity and difficulty with feelings—for example, may be very weepy about small frustrations, yet calm or silly when discussing the illness
May incorporate themes of illness in their play, such as pretending to have their sibling’s symptoms
Sensitive to changes in routines and rules; decreased limits and extra treats can worsen behavior
May fear the illness is contagious and have fears of others, including themselves, becoming ill

School-Age Children (7-12 years)
Better able to understand and appreciate most details of diagnosis, prognosis and treatment
Understanding will be limited to cause and effect; may have more difficulty with nuance and uncertainty
May become preoccupied with the unfairness of illness and unsuccessful treatment
May need coaching about how to manage their anxiety
May experience anxiety as physical symptoms such as stomach aches or headaches
May seek extensive information to help tolerate their anxiety (e.g., wanting to visit the hospital, see a surgical scar or seek reassurance about the health of other important people in their life)
Sensitive to the ways that an illness may affect their ability to participate and perform in their normal activities, such as school, sports and lessons
May cope by staying very busy with either established activities or in ways related to the illness
May seesaw between apparent distress and happy engagement in normal activities
May have difficulty speaking directly about strong or difficult feelings

Adolescents (13-18 years)
Capable of comprehending the details of diagnosis, prognosis and treatment, including the uncertainty
May turn to friends and important adults other than parents as primary sources of support
Their understanding of the illness and of the sibling’s limitations may not translate into sensitivity or pitching in, in the way parents may hope; may appear selfish to parents
May engage in risk-taking behavior to manage their distress
Commonly feel guilt, unhappiness and/or anger as the demands of a sibling’s illness are at odds with their normal developmental tasks, such as increased independence and engagement with peers
Older adolescents may be ambivalent about pursuing greater independence during the illness (e.g., applying to college far from home)
Degree of closeness to the ill sibling may affect the way in which an adolescent responds to the challenges of serious illness

MOST COMMON PHYSICAL CHALLENGES

The child may have special precautions due to a suppressed immune system or the presence of a central line such as a chemo port.

The child may be particularly vulnerable to common childhood infections like chicken pox when they are receiving or recovering treatment. The parent should be notified if a child in the class is sick so that the parents may isolate their child while the classmate(s) is sick.
Fatigue
Muscle Weakness and Low Stamina
Neuropathy – numbness and/or pain in arms/hands or legs/feet
Mood Swings – particularly while taking high dose steroids
Altered Physical Appearance
Unsteady Gait
Hearing and Vision Loss
Gross and Fine Motor Skills Deficits
Nausea and Vomiting
Pain

MOST COMMON PSYCHO-SOCIAL/EMOTIONAL CHALLENGES
Lack of exposure to play groups, sports, and other extracurricular 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
Quest for normalcy
Feelings of being different
Turmoil of emotions including sadness, fear, guilt, anger, worry anxiety, loss and grief.

MOST COMMON SPIRITUAL CHALLENGES
Why me?
What did I do so wrong to deserve this?
Where is this all loving God?
Why do bad things happen to good people?
Who is watching over me?

ACADEMIC AND VOCATIONAL CHALLENGES
Curriculum and Scheduling
Standards of Learning
District and State Assessments/Testing
High School Outcomes
SAT & ACT Testing
Career Goals
Transition Issues
College and/or Vocational Planning

HELPFUL ACCOMMODATIONS
Two sets of books or instructional materials; one set for home and one set for school
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 communicate on a daily/weekly basis
Clarification of both oral and written directions
Hard copy of notes, power-points and study guides
Scribe to take notes
Chunking of assignments and tests into small parts
Extended wait time for responses due to slow processing
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 difficulties
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 guide 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 reading comprehension.
Use of noise canceling headphones to reduce demands on sustained attention.
Use of multi-modality learning with auditory, visual, and tactile hands-on activities
Use of formula bank and word bank to assist with work retrieval and memory issues.
Exempt from strenuous exercises, contact sports, and long distance running in PE class.
Participation in physical education activities as tolerated
Permission to wear sunscreen and a hat when going to recess or PE
Permission to wear a hat or a scarf due to hair loss or feelings of discomfort
Allowed to leave class 3-5 minutes early to avoid crowded hallways
Peer buddy when transitioning from class to class
Elevator pass when school has multiple floors
Locker assignment close to classes
Homebound services provided as needed. (Must be medically certified)