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When Chronic Illness Goes To School

By Joan Fleitas for ChildsWork/ChildsPlay

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.

Disability Bias: A Parent's View

By Tom Kinney for Attainment Company, Inc.

When a child is identified as having special needs, a subtle, seismic shift occurs in his life and the lives of his family that will continue to vibrate for some time. A process of estrangement between the family and the system -- represented by the school but extending beyond it -- is initiated, and, in some ways never ends. At its worst, it can set a pattern of chronic low self-esteem, low expectations and a lingering feeling of separation -- not being part of the fabric of school in general and society at large. It is the most personal of experiences and one that will change you and your child forever. If you are able to stay the course, however, you and your child can survive and thrive.

I remember the first time my daughter was shunned. Though it was 20 years ago, the wound is as fresh and raw as if it were yesterday. She was in kindergarten and she was invited en masse to a birthday party along with the rest of the kids in her class. When I went to pick her up, and told the hostess mother whose parent I was, I got "The Look" -- i.e., "Oh, you're her parent?" I was ushered to a separate room were she was shooting pool by herself. She seemed okay, and except for "The Look," nothing was said, but it was disturbing nonetheless. No attempt was made to explain her segregation and I was too stunned and saddened to ask. It was a dark portend of things to come.

Friends did not come easily to her, although she was a delightful, empathetic, naturally outgoing kid. Why was this so hard for her? I don't think we'll ever know -- some combination of genes and circumstances, perhaps. It seemed as though she exuded some kind of social aroma that was immediately discernible to her peers, and apparently also to nonfamily adults, that we -- her parents -- couldn't sense. Some things just "are the way they are" and the best way to get a headache is to worry them to death for no purpose. But, of course, that didn't stop us from trying.

We tried furiously to compensate. On those occasions when she was able to lure someone over to play with her or for an overnight, we pulled out all the stops, trying to engineer a peak experience that would so impress the visiting child that she couldn't resist coming back again. The harder we tried, the worse we failed.

Lesson #1

While the temptation to socially engineer friendships for your child is irresistible, you can't "make friends" for her. It doesn't work that way. Loneliness, while hard to watch from a parental perspective, provides a valuable learning experience and teaches kids to rely on their wits for self-entertainment. As long as they have your support, it won't crush their spirit. (Though at times it's hard to convince yourself of this.)

As elementary school progressed, the ostracism became institutionalized. She played softball for a season and although I coached her at home and she could drive the ball farther than anyone else on the team, not one fellow player spoke to her once all summer and we let her quit at her request after the last game. She played on a basketball team for several years (we made her stay the course this time), and we went to every practice and game and watched stoically as every other player studiously avoided talking to, touching, or throwing the ball to her. She had one good game where she scored a bunch of points and we thought maybe it would put her over the hump, but by the next week it was forgotten as though nothing had happened.

By first grade she was identified as having a learning disability. She had an especially hard time with reading. I vowed to read to her each night and have her read to me until she got over the hump. We read nightly for about five years, until she outgrew it. We went through a small library of classic children's books, but it didn't help an iota. It did, however, give her a love for classic stories, which she now pursues through a large movie collection, and it was a wonderful time for both of us. But it had zero impact on her reading abilities.

Lesson #2

Enjoy the process of helping your child for its own sake, whether or not it has a significant impact. Treasure the contact. Many of the movies in her collection are filmed versions of books we read years ago, because she sought them out.

As a child with a learning disability, she was loosely lumped in with children who were emotionally disturbed, cognitively disabled and physically challenged, as well as with students with autism and ADD. This became her default peer group, "The Speds," or "LDs" as some teachers still refer to them. Much of their time was spent in self-contained (read segregated) classrooms which mostly served to set them apart from their "typical" (today's proper PC usage) peers who soon come to see them as undesirable social partners. Coupled with the fact that special needs children often struggle with social skills anyway, the newly identified child soon finds herself a virtual persona non gratis in her own school district. This, of course, varies hugely from child to child based on variables such as parental involvement, the child's own personality, the degree of disability, and other factors. It isn't true of every child.

Lesson #3

My family struggled through all of this in an excellent school district in Wisconsin, always first or second (along with Iowa) among all American public schools when rated by state. Chances are your district will have it even less together. Only relentless and courageous advocacy will get you and your child through the special education system.

Before long, her immediate support group began to include a number of children with emotional disabilities, and she began to mimic their behaviors. School personnel, too often unable to make the distinction between innate and situational behavior began to treat her as if she was an EBD child. EBD children, who are often of above average intelligence and without doubt the most feared and disliked among any school subgroup by the staff, can be charismatic and influential. A common myth, not always untrue, is that they come from dysfunctional families. Before long, your family will be thought of as such because your child is mimicking the behaviors of their children. In fact, EBD kids are woefully underidentified, underserved and deserve an article of their own (which I won't get into here), except to make it clear that I'm not trying in any way to denigrate them. The point is, once your child is in special ed, she forms a new peer group that may have certain defined, destructive tendencies, and you'd better be ready for it.

Lesson #4

This is a tough one. What do you do when your child begins hanging with a destructive crowd? On one hand, you're so happy to see anyone accept him that you're hard pressed to say no. We decided to give each child a chance, but monitored closely and attempted to make direct contact with the parents. If they are unavailable or seem to dodge your efforts to connect, that tells you all you need to know. Make sure that child's home is a safe place for your child to be before you allow him to go there -- or confine their out-of-school interactions together to your home where you have some control.

Her birthday was an annual drama that we dreaded above everything else. She would start planning for it days after the previous one, which was always a guaranteed failure. She would make out lists of all the kids she would invite (virtually all of whom we knew wouldn't come), what they would do, how they would celebrate, the fun they would have. The contrast between her boundless optimism and the inevitable disaster of it all was heartbreaking. One year, as child after child declined, I found her in tears one day, begging a girl over the phone to come to her birthday party. That was probably the lowest point for us. It threw me into a silent rage I can still vividly access two decades later when I think about it.

By middle school, it had begun wearing on her, visible in her affect -- even at a distance. I have some photos taken around that time that I still can't look at. Her hair is greasy and matted, parted carelessly, with no expression whatsoever on her face. A school psychologist around this time told us she was the most depressed kid she'd ever seen. Bear in mind, this is a naturally ebullient child. What had happened, and what could be done about it?

Neither of these questions had easy answers. Looking back now, I'm not sure the answers themselves are all that meaningful. If pressed, I would say this: She had problems connecting with other kids before she was identified. Her deficit reading skills made school hard, got her identified, and consequently reinforced her segregation in the special ed ghetto. There she cohorted with kids with emotional disabilities, some of whom had some serious issues, and she empathized with them and vice versa. After several years, she had taken on the outside look of their inside problems. The difference, I believe, was that these weren't her issues, her problems, but she presented as though they were. For other adults working with her, they saw the affect of an EBD kid.

Lesson #5

Inform yourself and keep your own counsel. While it's important to communicate with and work with school personnel, from the homeroom teacher to support staff, like the school psychologist, bear in mind that nobody knows your child better than you do. Don't let them tell you WHO he or she is.

I could schedule an entire season of "movies of the week," about her subsequent misadventures, one episode at a time, from drug and alcohol experimentation to sexual acting out, to involvement with the law and so forth, but at some point things actually began looking up. I eventually got her hooked up with a community "youth center" for round kids who didn't fit into square holes and it gave her an improved default peer group that she was able to grow into. Things at school slowly got better and she was able to find a sort of alternative, misfit crowd that acted out mildly (mostly by way of dreadful clothing selections, which I guess is harmless enough) but steered clear of major mischief. By the end of high school, she had more friends than the average kid and had really come into herself. That was seven years ago and that continues to be the case. She's lived responsibly on her own, has gainful employment, and is liked and respected at work.

Having said that, however, she hasn't gone on to college, says she never will, and she's still angry and resentful when the subject of school comes up. She still suffers from chronic low self-esteem. The first cut is the deepest. Those early school experiences don't go away. It's true for all of us and she'll have to learn to deal with it.

The following things have become clear to us as parents only over time:

• It didn't matter so much WHAT we did as THAT we did -- we tried. Trying -- doing something, anything -- gave us hope and it gave us something to do besides worry and mope. It gives you a stake in the process.
• Your child will see and appreciate your effort no matter how much he acts like he doesn't. Later in life he will express this to you.
• While your special ed child may look and act like others who don't have support at home, in the long run that support makes all the difference in the world and starts to become apparent after high school. However, this is a distinction school staff often can't make, and you will get lumped in with the "bad" parents. Deal with it but don't accept it.
• It's better to encounter life problems when you're young and flexible (as painful as it is for us to sit by and watch) because you're able to develop coping strategies that last all your life. Our darling girl has developed tremendous empathy for those who struggle in life and is a compulsive good Samaritan.
• Conversely, kids who have smooth sailing early on often hit rough waters later in life and are less able to cope with them when they do occur. Take solace that your child is learning lifelong coping skills.
• Emphasize strong social skills...kids with academic deficits can make up a lot of ground with good social skills, because adults respond so well to good social skills and see so little of them. Our daughter is the social skill champion of the world.
• Put your ego on hold and make a complete nuisance of yourself at school, staff responds to squeaky wheels...be nice -- but obnoxiously persistent.
• Don't get hung up on the "whys" of your child's problems. When you're in the middle of dealing with his issues, you will experience a pressing need to "find the reasons"...as if there were some single, traumatic or dramatic source that can be cancelled out by sheer knowledge of its existence. Let it go. Some things "just are." Deal with the symptoms.

With 20\20 hindsight, here's some things we did that turned out to be helpful:

• Get a handle on the IEP process. You can really make it work for you, but it requires your attention to it.
• Never miss an IEP meeting and be outspoken at them, but also listen and respect school staff, they get too little of that.
• Make your child attend at least every other IEP with you and talk to, not around, her at the IEP.
• Get your child involved in a youth group that caters to different kids who also were left out of the school social hierarchy, if one is available. Many communities have "all ages" dances and DJ shows in community buildings where there is at least minimal supervision.
• Back off your parental impulse to give constant advice to your child and pick your spots...use "teachable moments" to get through.
• If humanly possible, don't let your child fall behind a grade. Every year they are held back drastically increases the probability of their not graduating.

I tend to think that as hard as all this is on the child, it's almost harder on the child's parents. Every child has his own hurdles in life unique to him that he will have to deal with. You can't pad his every fall. I'm convinced that much of that is genetically predetermined. Looking at my two girls, I think that had they been raised by wolves in a cave in Tibet, they would still be essentially who they are. Here's what I've come to believe: Parents take too much credit for their children's successes and too much blame for their failures. I know a couple who have two kids, now adults: one a great success, one a complete failure. They vacillate between taking all the credit and all the blame. It doesn't seem logical to me. Let go a little on both ends, give your child a little more credit and yourself a little less blame.

And here's the funny part...all things considered, in terms of where our daughter is at today, I wouldn't trade a minute of it.

The Path To Inclusion

By Camille Jackson for Tolerance.org

Creating an atmosphere of inclusion should always be a priority for schools, but for many of us, it can be a perplexing task. Although teacher diversity is at an all time low, our student population is becoming more and more diverse.While we want to create an inclusive classroom for both teachers and students, there`s been little discussion on how to do that.

How do we make sure that all students feel valued, respected and represented in the classroom?

Recognize The Need For Change

In Teaching to Transgress, famed author and professor Bell Hooks writes, “If the effort to respect and honor the social reality and experiences of groups in this society who are nonwhite is to be reflected in a pedagogical process, then as teachers – on all levels, from elementary to university settings – we must acknowledge that our styles of teaching may need to change.”

Begin With Respect

According to Dr. Irwin Blumer, the department chair at Boston College’s Lynch School of Education, while multicultural education helps students to live and work in a diverse world, it cannot be implemented in a superficial way. A multicultural curriculum must feature more than just “heroes and holidays.” As elementary school principal Shawn McCullough says it must move beyond “a sombrero in the front office and taco Tuesdays.”

Once respect has been established, Blumer says it can lead to “open and honest discussion about race and racism in this country -- a topic we tend to shy away from.” Christine Rose of Students and Teachers Against Racism explainsin her paper, The Indian Student in Public Education, that when Native history is not included in history class, “Native people are denied closure, as well as the respect and encouragement to succeed in mainstream academics.” She explains that ignorance of these issues can lead to blaming the victim, instead of fostering compassion and understanding. She also encourages multicultural educators to be respectful of and sensitive to the cultural differences, learning styles, and the desires of Native parents, as well.

Talk About It

Ongoing dialogues throughout the year help administrators, teachers, and students speak openly and honestly about respect, the social climate and how to break down barriers in their schools. The Southern Poverty Law Center sponsors Mix It Up, a national campaign to identify, question, and cross the cultural boundaries that separate groups of people. Each year on November 16, the Center coordinates a national event during which students and faculty make new friends by sitting at a different table for lunch. Not only they break down social boundaries, but cliques, and isolation, as well.

According to Beverly Daniel Tatum, President of Spelman College in Atlanta and author of Why Are All the Black Kids Sitting Together in the Cafeteria? (Basic Books, 2002), professional development courses can help teachers to address the issue. “In order to increase teacher comfort, we need to talk about [race] -- and not in a blaming way," says Tatum. "We are all the products of our socialization. The idea is to help people, in a constructive way, look at what messages they got growing up…It’s important to be able to say we all have participated in reinforcing the cycle [of racism] and we all try to interrupt it.”

Integrate Multiple Voices

It’s important for educators to ask why the accomplishments of people of color have been missing from the classroom. So many voices have been muted over the years. Tatum says it’s inevitable for teachers who look at a subject area in an inclusive way to run into racism. But when you include them in the classroom, your students will find your lessons, and the world, much more multidimensional.

Make A Commitment

As principal of Georgia’s Gainesville Elementary School, McCullough has molded his school into one of the highest performing majority Hispanic schools in the country, a remarkable accomplishment considering 93% of the student body is impoverished. McCullough attributes his school’s success to the teachers “fundamental commitment to each child’s success and professional accountability.” Whether it means working until 7 p.m. or holding parent/teacher conferences on a Saturday evening when parents are home from work, the school staff is there.

Gather Resources

Teaching Tolerance, a publication of the Southern Poverty Law Center targets teachers looking to make sense out of a multicultural curriculum. The magazine offers teachers tools for educating diverse classrooms and promoting equity and justice. By visiting the Teaching Tolerance website, teachers can order classroom activities, kits and handbooks, and curriculum on subjects ranging from the civil rights movement to respecting physical differences.

Take Responsibility

Principal McCullough, a national keynote speaker on diversity issues, says extraordinary challenges, like incorporating multiculturalism in the classroom, require extraordinary people. Having a multicultural curriculum is not about what activities you do or about having a diverse staff, he says. It’s about responsibility -- and not just for teachers. All educators have a responsibility to challenge the status quo. Blumer adds “a principal has to be skilled enough, knowledgeable enough, and some would say, courageous enough, to get the issues on the table.”