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
childhood
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.
References
Cystic Fibrosis Foundation
Fleitas, J. [a] Band-Aides and Blackboards: Health
Education Resources
Fleitas, J. [b] Band-Aides and Blackboards: Tips for
Teachers
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.
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