Published on the Guidance Channel website  May 7, 2001

                By Joan Fleitas, Ed.D., R.N., Associate Professor of
                Nursing, Lehman College, CUNY 

                Imagine, if you will, a group of students gathered together to
                share with you their secret challenges -- growing up with
                chronic illness, aching to be like everyone else, worrying that
                their classmates might reject them if they were to learn of
                the medical conditions that mark their lives with indelible ink.
                Some of the youngsters in the group have diseases that
                cannot be hidden, and from them you learn about the stigma
                that surrounds them, the teasing and exclusion that is,
                according to them, more difficult to deal with than the illness
                itself, regardless of its severity and duration. 

                And there is more. Not only are these students bothered by
                the social response to their medical conditions; they must
                cope with the physiologic effects of the illness and its
                treatment as well. Fatigue, pain, labored breathing, coughing,
                abdominal cramping…all symptoms that make it difficult to
                attend to the work of school. Teachers worry about these
                students, and worry about their own competence in
                responding appropriately to the medical emergencies that
                might well arise in the classroom. What to do if Justin starts
                seizing, if Kara turns blue, if Elizabeth acts confused, or if
                Kendrick is injured and begins to bleed? How to focus on
                education in the classroom when a third eye is necessary to
                monitor for the onset of medical emergencies? 

                Those students identified as having chronic illnesses should
                have individualized health plans with protocols for
                management that address those concerns, but the plans can
                only reflect those conditions disclosed by parents. Many
                youngsters have conditions that have not been reported to
                the school for fear of stigma, with the belief that because
                their illnesses are under control, they are not an issue. 

                Unfortunately, the group of students sharing their stories
                with you is likely to fall through the cracks of the sparkling
                floorboards of protective legislation. IDEA 1997, the most
                recent re-authorization of a law that promises all children a
                free and appropriate education in the least restrictive
                environment, barely mentions this growing population of
                students. Section 504 of the Disability Act mandates
                accommodations necessary for success in the classroom,
                and it, too, has few takers among students with chronic
                illness. Yet their needs are often overwhelming to them, and
                they cry out for recognition of the challenges they confront. 

                Several factors converge to produce an increased
                prevalence of children attending school with the burden of
                long-term illness on their shoulders: 

                     The shift from extended care in hospitals to
                     community-based management of chronic illness 
                     The success of the medical system in saving the lives
                     of very small and very ill babies 
                     The effectiveness of protocols for treating cancer in
                     Legislation heralding the right of every child to an
                     appropriate education 

                Chronic illnesses like asthma, diabetes, hemophilia, cancer
                and cystic fibrosis are fraught with educational
                consequences and prescriptive with associated implications
                for teachers and administrators, yet often schools are
                ill-prepared to manage children and youth who move back
                and forth between the roles of patient and student. 

                These youngsters bring to the classroom a diversity of
                medical conditions, but a remarkable uniformity of basic
                needs. Studies have indicated that there is as much
                difference in children within diagnostic categories as there is
                between them. The law addresses this reality by not
                discriminating when it comes to diagnoses; instead focusing
                attention on the consequences of the illnesses, regardless of
                their origins. Nonetheless, it is critical for those personnel
                working with individual students to have an understanding of
                the medical conditions, since symptom presentation will often
                vary according to diagnosis, and emergency management
                will be specific to the pathophysiology or psychopathology
                the children and youth present. 

                There are a number of resources on the web that provide
                diagnosis-specific guidelines for educators and school health
                personnel (Fleitas [b], 2001). Although these websites share
                many commonalities, they outline differences as well. For
                example, the Arthritis Society advises teachers to assist
                students with juvenile rheumatoid arthritis by planning stretch
                breaks to relieve stiffness in their joints, and by selecting
                seats for them that afford extra room and are placed in
                areas that makes standing and stretching less conspicuous.
                Students with cystic fibrosis have an ongoing need to cough
                out secretions, but may be embarrassed to cough in front of
                others. The Cystic Fibrosis Foundation suggests that
                teachers disregard the coughing, thereby modeling a similar
                response for the rest of the class, and facilitate for these
                youngsters non-obtrusive exits from the classroom for drinks
                of water when necessary (Cystic Fibrosis Foundation, 2001) 

                Children coping with chronic illness shared 'tips to teachers'
                through the website, Band-Aides and Blackboards, in an
                attempt to effect change in their educational experiences.
                "When I'm not paying attention in class," one child explained,
                "it's often because my heart isn't sending out enough oxygen,
                not because I'm being bad." And he pleaded, "I wish that
                you would know those signs, so that I wouldn't always be
                getting in trouble." Another youngster urged teachers to
                "please be aware of how much of an impact you have on
                little ones." She explained "I was diagnosed with diabetes
                when I was in second grade. My teacher, who was my
                favorite person in the world at the time, sat the entire class
                down and told them that I had 'a disease.' From second
                grade on through high school, friends were few and far
                between; not many people wanted to be friends with 'that
                girl with the disease'." (Fleitas [b], 2001). 

                Educators shared tips as well, relating exemplars of practice
                that reflect creative approaches to medical needs in the
                classroom. One teacher remarked, "I have individual
                conferences with all of the children. I ask those with medical
                problems to explain their conditions to me...in their words.
                Then I ask how I can help them to be happy and to do well
                in school. It really sets a positive mood, and they're
                appreciative that I haven't singled them out in the
                classroom." A school administrator shared this strategy;
                "One of our teachers has a youngster in her class who is
                terminally ill with a brain tumor. This teacher is an absolute
                gem! She is sensitive, caring, and extraordinary in so many
                ways. For example, when our young girl started to lose her
                hair, the teacher declared 'Crazy Hat Week,' so that all
                children would wear hats to school." (Fleitas [c], 2001). 

                When two worlds co-exist, as they do for those who
                intermittently assume roles of patient and student, a mandate
                emerges. Teachers and other school personnel, parents, and
                health professionals must work creatively and collegially
                with these youngsters to address needs that span both
                worlds. If this is done well, chronic illness in the classroom
                will be a stimulus for growth rather than a harbinger of fear. 


                Cystic Fibrosis Foundation 

                Fleitas, J. [a] Band-Aides and Blackboards: Health
                Education Resources 

                Fleitas, J. [b] Band-Aides and Blackboards: Tips for

                Fleitas, J. [c] Band-Aides and Blackboards: Teaching Tales 

                National Arthritis Organization 

                Thies, Kathleen M. "Identifying the Educational Implications
                of Chronic Illness in School Children." Journal of School
                Health. 1999; 69(10): 392-396. 


To the frog ponds
What do you think?
To the site map

Joan Fleitas, Ed.D., R.N.
Associate Professor of Nursing, Lehman College, CUNY
Bronx, New York 10468

Published: May 1, 2001