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Educating the Child
With a Chronic Illness

Educating Children with Chronic Illness
by Ann G. Bessell, PhD

When a child is diagnosed with a chronic, life-threatening illness, it can be an overpowering experience for the entire family. Parents often find themselves in the role of advocate for their child, communicating the child's needs and protecting his or her rights. Nowhere is this more evident than within the context of the child's education. It is hard to believe that a family thrust into such a horrific vortex of medical and financial uncertainty must also fight for their child's schooling. However, such is the case for the many families faced with childhood cancer, AIDS, cystic fibrosis, muscular dystrophy, and other life threatening pediatric medical problems.

When my son, Jonathan, was diagnosed at age 11 with lymphoma, a form of cancer, I focused on his medical treatment. As a medical technologist and instructor of microbiology, I was able to read and decipher the medical literature and speak technically with the oncologists. I thought my medical background would insulate Jonathan, but I had no idea that there would be so many decisions to make and roadblocks to circumvent. Soon after the diagnosis, we held the first of many family meetings so we could decide the best way to divide family tasks and responsibilities. Jonathan was the youngest of my three boys who were close in age and even closer emotionally. We decided we would have a united front and fight this horrible thing together as a family. Throughout the many hospitalizations Jonathan endured, my husband Lee and I took turns sleeping at our son's bedside in the hospital and working when we could during the day. We continued our involvement with Little League baseball, participated in school activities, and supported each other. Together with his brothers, Ian and Paul, we were determined to maintain some semblance of normalcy for Jonathan.

However, we were astounded when Jonathan's first return to the classroom was tenuous at best. I requested that all his classmates be allowed to wear hats so Jonathan would not feel different, but it was denied because of school rules prohibiting hats. Jonathan was still very excited and determined to return to school, but soon began to experience the isolation of someone who was "different." There were whispers about his appearance, fears about the possibility of his disease being contagious, and parental concerns that close friendship with someone "dying" might be detrimental to their own children. Many families were supportive, but others disappeared. My family's strength was fostered by the belief that Jonathan was fighting for his life because death was not an option.

Rising to the challenge, Jonathan perceived these problems as opportunities to allay fears and educate others. He would explain his illness in great technical detail and quote optimistic statistics concerning his positive prognosis. When his friends told him they didn't know what to say or do, he said, "Just act normal and be my friend." His optimism never wavered, but he became upset and frustrated when no one seemed to care about his schoolwork. Teachers would not collect his homework or would avoid giving him class assignments. It appeared that the pervasive attitude was to minimize the importance of his education. A parent I met at the doctor's office shared with me she was told, as we were, not to worry about school for her 6-year-old because, "It's only first grade. Worry about saving her life first, then concentrate on school."

What message is this sending to a child who has a chronic illness? Unfortunately, when children are excluded from school or not provided with educational opportunities, it may communicate that there are no expectations for them because death is probably imminent.

Education communicates society's cultural values and expectations for its children. Education within the school environment (when the child's health can tolerate it) is even more crucial as it provides children with the opportunity to learn, socialize with peers, experience success, and develop increased independence and control over their environment. It also provides a sense of normalcy. Unfortunately, children with chronic illness often miss a lot of school. In addition to the physiological needs, the child's social/emotional development and how he or she adapts to the disease and its treatment can directly effect both cognitive and social adjustment that in turn contributes significantly to school performance. Also, the unique conditions that impede cognitive, neuropsychological, and academic functioning, and school reentry, are often directly related to the specific dynamics of the disease and the treatments for the child.

When students who are ill describe their difficulties in school, they frequently cite learning problems pertaining to attention and concentration, memory (visual and auditory), sequencing of tasks, performing under pressure, and comprehension. Rather than minimizing the need for education during illness and treatment, I believe the focus should be redirected to creating educational plans that strengthen current cognitive skills, develop strategies to aid in the acquisition of later cognitive skills, and the creation of an intervention plan to accommodate deficits if and when they are identified throughout the student's educational career. It is also important to realize that without appropriate interventions, the lack of educational success may result in the development of a sense of inferiority that leads to the anticipation of continued failure, lower self-esteem, and eventual learned helplessness.

As I began my own quest for reasonable educational accommodations for our son, I met far too many other parents of children with special educational needs who faced a similar, daunting task. Alone, they had to challenge a school board's restrictive and unreasonable policies, and entrenched attitudes that hindered their children's health and education. Parents were often told services were unavailable, and many gave up because the paperwork was so cumbersome and lengthy. To make matters worse, many families found it hard to advocate for their children because they received mis-information or had issues explained to them in language they do not understand. I became determined not to complacently accept the inequities that existed and began to advocate instead. When I first asked for dual enrollment in both homebound and public school, I was told that my son was either too sick to go to school or too healthy to stay at home. I continued to pursue the issue and eventually prevailed. However, such small frustrations gave way to major battles, like the refusal of both Florida (our home state) and Massachusetts to pay for Jonathan's education during his four-month hospitalization in Boston for a bone marrow transplant.

Jonathan's biggest educational concern was that he would not graduate with his friends from elementary school and that he would be left behind when all his friends started middle school. Florida refused Jonathan's education because I "physically removed my child from his education," and Massachusetts told me that they "only educate legal residents and a hospital isolation room is not a legal residence." Even though it would have been easy for him to take a break from school while undergoing treatment, Jonathan was so upset that he wrote a letter to President Clinton.

It did not seem possible that federal laws such as Section 504 of the Rehabilitation Act of 1973 (P.L.93-112) and IDEA (Individuals with Disabilities Education Act) would not assure Jonathan a free and appropriate education. My husband and I passionately and tirelessly pursued Jonathan's educational rights beginning with filing an official complaint with the Office of Civil Rights (OCR). Along with Jonathan's letter to President Clinton, we wrote and called members of the County School Board and members of the state legislature, all to no avail. Our plans to continue pursuing this issue were temporarily interrupted when Jonathan unexpectedly passed away on June 5, 1994. Our local school district, compelled by the OCR, eventually reimbursed us for the cost of the tutor we hired in Boston, but continued to insist that it was not responsible for educating a child who left the state.

Although Jonathan was fighting a life-threatening illness, his death came as a complete surprise, paralyzing and engulfing me into the darkness of grief and bereavement. I wanted Jonathan's message about school and education to be heard by others. I began speaking at conferences for the Leukemia Society, and serving as an advocate to help guide other parents in their efforts to obtain accommodations and services for their children. My family also spoke publicly of our experiences and concerns. I couldn't believe how many families were being told to "put education on the back burner and concentrate on saving the child's life." For most families, there was little or no communication between the medical community and educational professionals; so many children were falling through bureaucratic cracks.

I returned to school and earned a PhD in special education in May 1999 (an endeavor only made possible by the encouragement and support of my husband and sons). My dissertation research explored the impact of educational experiences on quality of life for children with cancer. The research also afforded me the opportunity to advise and advocate for many of the families I interviewed. It was strikingly clear that there was a desperate need to fill the void of services for families, both educational and emotional, and to eradicate the distorted perceptions and lack of sensitivity that existed.

Fortunately, advances in medical protocols have resulted in an ever growing population of long-term survivors of life-threatening childhood illness. However, even before medical research determines exactly what the long-term side effects are, these children should be considered at high risk for developing learning problems over time. That means a proactive rather than a reactive stance should be taken. Educators should not wait until a child fails in school to intervene. We now know that some children don't begin to have learning difficulties until several years after treatment has ended. It may be difficult to justify the remediation of a problem before test scores verify it really exists, but baseline assessments could help alert educators of the possibility of a problem when a child begins to exhibit signs, even subtle ones. Then, preventative educational interventions could be incorporated into the child's education before the full impact of delayed effects is realized. The interventions may actually minimize delayed effects.

It remains iniquitous that as these children emerge from the darkness of their medical problems, they continue to have significant educational needs that have historically been ignored. There are important strategies for teachers to learn and parents to know when educating children with health issues. While an exerted effort should be made to meet children's needs with compassion and flexibility, it is also important to embrace successful parent-school-medical partnerships where everyone participates in the decision-making process. Soon after diagnosis there are issues of school re-entry and subsequent absences. Teachers can help make these times easier by encouraging students in the class to maintain continued contact and communication.

There are also many things that teachers can do to help children academically. Emphasizing and reintroducing basic skills and teaching concepts in an environment that uses all the senses can allow for learning to take place in multiple ways, using different areas of the brain. Additionally, medical personnel can help by continuing to ask about school issues during clinic visits, even after treatment has ended. Questions about school subjects, relationships with friends, memory, processing speed, and test-taking difficulties should be asked. Some children may experience difficulty in school academics or friendships, but may not be aware of the possible connection to their medical treatment.

Family members need to be informed about what they can do to help. Sometimes cognitive changes are very subtle and family members are the first to see these slight changes when they surface. Parents need to know what their child's rights are within the school system and where they can go for help.

As I look back, I am reminded how Jonathan never gave up. He taught me about courage, fortitude, tenacity, and tolerance. Jonathan has also been my greatest teacher. He has taught me more about the needs of children with health issues than can be found in any textbook. Every time I teach a class or speak to a group of parents, educators, or physicians, I do so because of him. As I strive to combine all that Jonathan taught me with my continued concern about the great disparity and inadequacy of education and understanding that exists today, I realize that it will take educators, medical professionals, legislators, and the community to join together. My ultimate hope, as I continue to transform what began as personal journey of experiences into a professional career, is for all of us to some day make a significant impact on the way we, as a society, treat and educate all individuals with special needs.

Ann G. Bessell, PhD, is a Research Assistant Professor in the School of Education, Department of Teaching and Learning at the University of Miami, FL.

Keeping the Emphasis on Education for Children with Chronic Illness Strategies for Teachers
Find out about the child's illness, condition, or disability (including future expectations).
Request help to facilitate school reentry when the child is ready.
Suggestions for class activities involving the child who is out due to chronic illness:
Create a class unit about children with special needs.
Write movie reviews or TV show reviews to send.
Send information about a new video or computer game. with secret codes.
Share comic books and follow-up with a call.
Use e-mail to create buddy lists.
Create a web site/chat room/info-board.
Make an audiotape or video.
Schedule phone calls, visits, special events.
Arrange for mail deliveries every day.
Strategies for Families
Absolutely believe your child has a right to attend school.
Review information about eligibility and the process for both education laws (IDEA & 504).
There is always an appeal process if you are unhappy with decisions (Don't accept "no").
Be proactive and involved in your child's education.
Maintain teacher communication.
Ask for class involvement with your child when he/she is at home or in the hospital.

Copyright 2002 by Psy-Ed Corp. All Rights Reserved.
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CARING FOR THE CHILD WITH A CHRONIC ILLNESS

Doreen B. Greenstein, Ph.D.
Developmental Psychologist
Cornell University Extension Service

(While these are guidelines for your child's teacher or other caregiver it is up to you to work with them to assure your child of the best possible educational experience.)

Chronic illness is an "umbrella" term. It is not equivalent to a physical disability because, for example, children with cerebral palsy can be ill or well, independent of their disability. While it is likely that children will have a variety of health problems during infancy and childhood, these problems for most children are relatively mild and intermittent, and do not interfere with their development. For some children, however, chronic health conditions affect their everyday lives throughout their childhood. These children's parents and child care providers must also deal with the child's ongoing health problems on a daily basis.

Chronic illness may limit a child's activities a lot or a little, and the limitations may come and go. It is impossible to determine a child's special care needs just from the name of an illness or diagnosis.

Some factors perhaps are more important for children with chronic illnesses than for others because illness can interfere with their developmental needs. As one example, chronic illness can affect preschoolers as they become more aware of their bodies and mastery of the environment. A medical condition may necessitate parental control beyond the time when "typical" preschoolers are assuming part of the control.

Here are several situations where conflict may be created as the youngster tries to assert independence: following a special diet for a child with Celiac Syndrome (who cannot eat wheat), remembering insulin shots for a child with diabetes, and frequent postural drainage for a child with cystic fibrosis (which also can be embarrassing because he is now conscious of what other children think of him), and lack of stamina for a child with a congenital heart condition (who must watch other children in active play).

However, parents and caregivers know that these limitations or restrictions are not negotiable. As preschoolers test adults' limits, there is natural conflict with adults' demands. Children with chronic illness, more than other children, need opportunities to make choices-to have control over whatever part of their lives they can have control over. They must be able to say (in safe situations) the emphatic "No!" for which preschoolers are famous.

Strategies for inclusion

Build your relationship with the child in ways other than rules regarding the child's chronic illness. Use language about the child's illness that the child can understand. Use the same terms and phrases that the child's parents use to avoid confusion. Ask the child if she wants privacy when you are doing some illness-related procedure that might be embarrassing. Of utmost importance are the possible medical needs of a child with a chronic illness.

Here are other things you'll need to keep in mind when caring for a child with a chronic illness:

1) Update medical records frequently.

2) Post telephone numbers where you can reach parents (and alternate emergency contacts) at all times. Frequently check that all emergency contacts and phone numbers are current.

3) Keep records of the results of special testing that has been done.

4) Keep dated reports of all injuries or health-related incidents that occur while the child is in your care.

5) Document your health-related communications with the child's parents and health care providers.

6) Keep careful, ongoing records of the child's medications.

7) Make sure your staff know routine medical needs for this child.

8) Frequently check supplies needed for routine care of the child and that everyone knows where they are stored.

9) Be vigilant about following the child's dietary or activity limitations.

10) Discuss daily activities with the child's parents and ask them to tell you activities that should be avoided or modified.

11) Check with the child's parents before any field trips, special events, or activities that are out of the ordinary for your program.

12) Emphasize to parents the importance of keeping you informed of any changes. These can include changes in the child's daily routine, the child's condition or treatment, events in the home that may effect the child's behavior, emergency contacts, etc.

All programs that serve young children are required to have careful plans for handling emergency situations. When a child with a chronic health problem comes into your program, make sure you have a specific plan for this child. You should:

Talk to the child's parents (or child's health care provider) to plan in advance for an emergency health crisis.

Understand what might cause a crisis and how often a crisis might occur.
Learn how the child might behave before, as well as during and after a crisis (sometimes there are changes in behavior, level of activity, or other warning signals).

Know when you need to call for additional help. As a caregiver, you will need to remember that parents who have children with chronic illnesses are often afraid to leave them. Here's a common response: "I was scared stiff the first time I left Stacey with somebody else. I don't think I left her until she was two years old, not to go to a movie or anything. Other people convinced me that she'd be safe with a trained respite person, which gave me confidence. And now I can leave her for a little while at least."

Children with chronic illnesses are more likely than other children to experience frequent doctor and hospital visits. Some of the medical procedures they undergo are, in fact, frightening or painful. Hospital stays can also be frightening and lonely. Because of young children's limited ability to understand their illnesses, they sometimes believe that they are being punished.

As a person experienced in soothing children in ways suited to their developmental level, you are in a position to help parents calm a chronically ill child's fears and confusion about punishment. Don't be surprised if a child regresses after a hospital stay. If you have any questions or doubts, ask the child's parents or ask your county public health nurses for suggestions.

Resources for caregivers:

If you want more information about a child's chronic illness or health condition, ask the child's parents, your county public health nurses, or the child's health care provider. There are many national organizations for specific health conditions.

Association for the Care of Children's Health
3615 Wisconsin Avenue NW
Washington, DC 20016
(202) 244-1801