Educational Challenges for Childhood Cancer Survivors
by Alma Morgan, MEd
Today, more than ever before, childhood cancer survivors are experiencing academic success. Many of these survivors are graduating high school with honors; attending colleges and universities of their choice; going to law school, medical school, receiving postgraduate and doctorate degrees; and entering the world of work in their chosen career paths. How is this possible? First, these young people are survivors; they are living. Second, they are not letting the fact that they had cancer get in the way of their future goals, dreams, and aspirations. Third, they are seeking guidance and support from those who can aid them in their endeavors.
Of course, these same young people who are surviving childhood cancer have also been faced with obstacles that stand in the way of their academic success. These young people often experience late effects of treatment that leave them with physical and cognitive challenges. While many of these late effects do not show up until years after treatment, they are still challenges that must be addressed in the educational setting.
At the same time, many of these young people had to cope with being socially isolated from peers, leaving them with social-emotional challenges that would need to be dealt with in later years. Consequently, these physical, cognitive, and social-emotional challenges greatly affected the education of these childhood cancer survivors, but with strong will and determination, they have persevered and been academically successful.
These young people often experience late effects of treatment that leave them with physical and cognitive challenges.
In working with these children and teens, I have found that these young people are overachievers. They put forth the hard work and effort needed to assure success. The teens and young adults talk about spending four to six hours on homework at night when their peers are only spending two hours to make the same grade. They learn to compensate for short-term memory loss, difficulty with word retrieval, neuropathy in the hands and feet, slower processing, fatigue, low stamina, and many other challenges.
Members of the comprehensive teams in medical centers are addressing their limitations and deficits. Hospital teachers and educational consultants follow these children and teens throughout their school careers and into their adult lives. Neuro-psych evaluations are administered to determine their strengths and weaknesses and to offer strategies for dealing with the areas of weakness. Schools are being educated on childhood cancer, with emphasis being given to diagnosis, treatment, side effects, and accommodations needed in the school setting to address their needs. These accommodations can be provided through educational plans such as an Individualized Education Plan (IEP) or a 504 Plan.
A few of the most frequent accommodations requested for childhood cancer survivors are as follows:
- Two sets of textbooks, one for home and one for school. Many backpacks can weigh 40 lbs. or more, which is too heavy for a student who is dealing with fatigue and stamina issues.
- Modifications in the physical education curriculum. Many survivors are physically unable to participate in contact sports, strenuous exercises, and long distance running.
- Extra set of notes in lecture classes. This is particularly helpful for students who are experiencing neuropathy in the hands.
- Use of word banks or formula banks to assist with short term memory loss and word retrieval deficits.
- Extended time to complete classwork, tests, and quizzes. This is helpful for those who have slower processing and cannot finish assignments and tests within the given time.
- Calculator and math manipulatives for math assignments. Visual aids and manipulatives are often helpful to those who need a multi-modality approach.
- Moderate workload with emphasis on quality versus quantity. For example, in mathematics, if a student can show he can master the concept by doing 10 homework problems rather than 20 problems, this would allow for time to rest or engage in extracurricular activities that were not possible during treatment.
In addition to the accommodations, class in-services using puppets and other resources are being conducted for classmates by educational consultants and other medical team members so that young people can bring encouragement and support to the survivor. Even at the college level, staff may need to be educated because the cancer survivor is often entering or returning to school years after treatment. While the survivor may look wonderful, physical, cognitive, and social challenges may be hidden. Even then, professors, employers, and staff in the college’s Office of Students with Disabilities are usually more than willing to work with the survivor if needs are expressed.
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Alma Morgan is an educational consultant for the Hospital Education Program at Virginia Commonwealth University Medical Center in Richmond, VA. She visits more than 90 schools each year, assisting with writing educational plans and conducting in-services for students and staff.
This article was published in Coping® with Cancer magazine, January/February 2008.