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ESE504 : The Class : Advanced CD : Illness


Illness and special health problems

All of us get sick from time to time. Sometimes we have accidents and sprain an ankle, break a leg, end up in a cast for a while. Many children have surgery. Lots of us have tonsils removed, appendicitis, or need corrective surgery for a hernia or congenital problem. How is this different from the children discussed in this module?

There are three defining things that may require that a child be provided with special services:

Limitations in strength vitality or alertness

Personal notes

Link to web ring of childhood illnesses and prevention

Looksmart health categories

Children's chronic illnesses

Family Village resource links

Medical consult home page

The DRS Office medical information

Medical advice site

Medical advice about children

Detailed list of services and links

AMA American Medical Association for consumers

Healthtouch website and links

Quick definitions and summaries of many health issues


Learning about Health Issues for Youth

AIDS and HIV By 1997 as many as 1,000,000 children may have HIV. Within a period of 8 years, many will have AIDS. It is a condition that infects the whole immune system, making it difficult for the person ti fight off infections and illnesses. At present, it is believed by most that HIV is the precursor to AIDS and one of several distinct stages of illness...a) latency, b) symptoms emerge and child experiences increasing fatigue and frequent bouts with disease; c) serious illness, full set of AIDS symptoms, pain and imminent death.

Tips for Teens

General Information on AIDS

Medical details on AIDS in youth

Links to information on youth with AIDS and HIV

Current data site for HIV and AIDS

Research on AIDS and HIV

Epilepsy is also called an idiopathic seizure disorder. The seizures are actually a symptom rather than a disease. There are several forms of epilepsy and many causes. About 1/2 of 1% of youth have some form of seizure. A seizure or convulsion may be sudden, violent, uncontrollable contractions or a brief "loss of contact" or a few moments of what appears to be daydreaming. The most common forms of epilepsy are: petit mal seizure (brief "loss of contact" type seizures) partial complex seizure febrile seizure generalized tonic-clonic seizure (grand mal) partial (focal) seizure temporal lobe seizure febrile seizure (children)

Please ask parents about seizures, perhaps with a health questionnaire. Many youngsters and parents do not mention the presence of seizures, particularly if they have been controlled for some time with medicine.

If a person has a generalized (Grand Mal) seizure, the following guidelines should be remembered:

a) Remain calm. b) Remove sharp objects from the area. c) Loosen clothing around the neck to help the person breathe. d) Place something soft under the person's head. e) Turn the person on his/her side to keep air passage clear. f) Remain with the person until the seizure has ended. g) Reassure the person as consciousness returns. h) Offer to call a friend, relative or taxi to help the person get home if he/she seems confused.

Do not attempt to force open the person's mouth or to insert any objects into the mouth. Do not try to hold the person down or stop his/her movements. Do not attempt CPR, unless the person does not start breathing again after the seizure has stopped.

Definition and links

Resources and clear summary

Personal story about interest in Epilepsy

Famous People with seizures

Dr. Koop cite with links, resources and chat opportunities

Epilepsy Foundation

First aid for tonic clonic seizures

New medication for uncontrolled seizures

Information related to special needs youth

Asthma is a chronic disease of the respiratory system - nose and mouth, windpipe (also called trachea), lungs, and air tubes (or airways) that connect the nose and mouth with the lungs (these tubes are called bronchi and bronchioles). Some youngsters have difficulty breathing only occasionally, while some students have breathing difficulties nearly every day.

Asthma usually has three primary features: the airway linings are swollen or narrow and become constricted. The hypersensitivity may come from cold air, exercise, allergens, or irritants like smoke, sprays, strong odors.

Asthma can be deadly. Every year children die because they have an attack and do not get the help and support they need.

Tutorial for youth

All about asthma and treatments

Asthma information ring

Information and diagrams about asthma

Parent information about children with asthma

Cancer is a well known illness. It is related to abnormal growth of cells that can affect any organ system or part of the body. Sometimes cancer is terminal and it is presently one of the highest rank killers of preadolescent children. Cancer is always traumatic for the children and the families. It can also create issues in the classroom with respect to death and dying.

Cancer in children

Resources for helping

Children's web page

Oncology Site, including art, research, newest findings

Family support site

Cancer research in children

Children's Cancer Center

Texas Cancer Center - famous and well regarded facility with state-of- the-art therapies

Research and information

National Cancer Institute

Childhood Leukemia

Cerebral Palsy Cerebral palsy (CP) is a common causes of chronic childhood disability, with a frequency of 1.4-2.7% of live births. It occurs more frequently in youngsters who are born premature, and there is an increase of children who survive early births. There are a number of types of CP. Spastic Cerebral Palsy - Children with spastic CP have stiff and jerky movements because their muscles are too tight. They typically have a hard time moving from one position to another or letting go of something in their hand. The most common type of CP, nearly half of all people with CP have spastic CP. Ataxic Cerebral Palsy typically involves low muscle tone and poor coordination of movements is described as ataxic (a-tax-ick) CP. Youngsters usually look very unsteady and shaky, similar to a tremor you might have seen in a very old person, especially when they are trying to do something purposeful and targeted, like write or turn a page or cut with scissors. Athetoid Cerebral Palsy describes the type of cerebral palsy when muscle tone is mixed - sometimes too high and sometimes too low. Children may have difficulty holding themselves in an upright, steady position for sitting or walking, and often show lots of random and unplanned movements of their face, arms and upper body that they don't intend. to make.

Cerebral Palsy from one teacher's view:

Imagine waking up in the morning and attempting to start a new day. You struggle to walk down the hallway; at the breakfast table some assistance is need to place the food on your spoon because of bone joint deformity. Unfortunately this picture is all too familiar for many children. Cerebral (head) Palsy (injury to the brain) affects the daily lives and functions as mentioned earlier. Cerebral Palsy is caused by an injury to the brain some time during the developmental and birthing stages of life and disturbs the formation of bone, joint and muscle development. Cerebral Palsys have been classified into seven various stages with different effects to the functional motor skills.

Spastic Cerebral Palsy contributes to sporadic, unpredictable spasms that causes loss of muscle control. Though all cases of CP are severe, it is not considered life threatening. However other stages of disabling illness’ can and often do accompany cerebral palsy. Over the last few months the opportunity to meet, observe and aid in a child's class has been presented. In this class at an elementary school in is a thirteen, year old lady with the biggest smile a person could image. Sunny not only has Quadriplegia Cerebral Palsy, but also is legally blind, mildly retarded and has multiple health issues. She requires an assistant for feeding, changing diapers, physical movement and mental stimulation.

Sunny is not drastically retarded. She appears to be just slow in her reaction to questions. Her replies are not in the form of vocal communication. Her verbal responses are limited to a few words. She shows pleasure with big smiles and an unusual up lifted nasal sound in conjunction with a turning of the head toward the sound. If she does not like something she can say “NO” and often does. Sunny’s mental age appears to be close to her nominative development, but her limited ability to use Information Processing has affected the motor skills that require expedient reaction of situations.

Sunny is steadfast in picking and chosing foods that she likes as well as various kinds of music. Her school provided aid, assists her interaction within the class and all of the activities. For muscular development, Sunny is daily placed on a mat so she can stretch and move around. She has no ability to stand, walk or hold herself upright in a chair. Her mode of transportation is a non-electrical wheelchair that is fitted with waste and shoulder straps that prevent her from falling out of the wheelchair.

From her Aide's perspective, Sunny is energetic and tries to accomplish basic daily tasks, such as feeding, without support. She is developing a better mobility of repetitively moving a spoon to her mouth. When she started the school year, Sunny was only able to raise the spoon twice and now she is able to perform this action five times, but with some difficulty toward the last few movements. Still, she continues to struggle with the challenge and makes strides because she is steadfast and valiant in her insistence on doing all she can to be self sufficient.

Sunny certainly is entitled to participate in her education. It is with great pride that children like her go to school and learn, according to their abilities. She will not be able to be productive in the means of fully taking care of herself as a child and uncertain how much she will accomplish in self care by adulthood. So the question here is dose a child with multi physical, mental, and health issues belong in public schools? As I participated in her educational experiences, I realized there was disagreement at the school about whether she was entitled to receive support to learn and gain an education, for some proclaimed that she was only placed at the school to receive “Free Child Care”. . . .

Cerebral Palsy affects her daily life and functions as mentioned earlier. Some cases are serious and other cases are mild. Regardless of her abilities, Sunny is in the midst of a heated debate about educational services. As acknowledged earlier, education to help children be productive, as well as self-sustaining in life is necessary. How can we help form a resounding and firm "yes" to education, not only as sustained by the law, but in an honorable and sustained manner? Where do we draw the line between education and babysitting for teachers and school personnel who question Sunny's right to be in the classroom? Perhaps we should all spend some time with Sunny, and then take up the debate with Steven Hawkings or Christy Brown. - Written and subitted by John Steven Manley,student at Northern Arizona University

Personal stories of people who have CP

Premature births and CP

Definition ,explanations, and discussion of various forms of CP

Feeding programs and suggestions

Spastic Center and web ring in Australia

Site for information, research and support ideas

Muscular Dystrophy and chronic diseases that cause deterioration
Juvenile diabetes
Spina bifida

Try looking up links for some of the more common illnesses that might occur to students. There are a number of excellent medical encyclopedias on the web. Some are included here. There is also space to find others that interest you..

Try Dr. Koop's by clicking on the name.

Description or symptoms
Cystic Fibrosis An inherited disease that affects a child's ability to breath and may contribute to digestive problems. It may first be recognized by a teacher or parents by the thick mucous discharge and a hacking cough that does not respond.  
Hemophilia This is a rare blood disease that is nearly always passed through a sex-linked gene to males. The child's body does not have the natural ability to clot, so bruising or cuts can actually be fatal without medical attention. Children have this condition from birth.  
Juvenile Diabetes The pancreas is involved in not making the correct amount of insulin and the resulting condition leaves the child at risk for a large range of symptoms and long term secondary conditions. It may first be recognized by a child who is lethargic, complains constantly of a dry mouth and increased need to urinate.  
Muscular Dystrophy The most common and severe type is Duchenne muscular dystrophy. It usually occurs in boys between the ages of three and six. The disease progresses rapidly, and few survive their early 20's. Other forms include limb-girdle, Becker, facioscapulohumeral, and myotonic.  
Sickle-cell anemia A chronic hereditary blood disease that may develop over time. The blood cells clot within organs, causing damage to almost any part of the body. It is extremely painful at times, called a crisis, since the blood cells become unable to pass through the organs and carry the necessary oxygen to maintain body health.  
Spinal Meningitis This can be a serious disease that can lead to death. It often begins as a minor, influenza-like infection or by a sore throat, followed by the sudden onset of a severe headache, vomiting, fever, stiff neck, and mental confusion. In small children, meningitis may cause irritability, lethargy, a loss of appetite or a rash. In some cases it cause developmental delays, seizures and ADD.  


Tips and Strategies

Educational Interventions
Personal Notes

Kubler-Ross stages of death and dying - The stages go in progression through denial, anger, bargaining, depression, and acceptance. Knowing this can help everyone deal with the situation and support the student more effectively.

Home schooling

National Association for Education of Sick Children

It is important to fully understand the disease of any child who will be spending a year of his or her life in your classroom. You can feel more in control, less afraid of the situation the child presents and better able to distinguish onset of a real emergency.

Let the parents guide you, sharing their insights and struggles - and you may really be surprised at the heroic measures taken in the child's behalf.

Give students a chance to keep a health diary. They can keep track of good days, good hours, times they overcome pain, ways they take care of themselves - and it can also include diet and excercise habits.

Learn CPR and determine how to handle health emergencies. Consider the need for a classroom phone to summon help, call 911, get help during a fire drill if a number of students are not ambulatory.


Basic Needs

Gathering information and reading about youngsters with the wide spectrum of illnesses and symptoms may obscure the importance of seeing the child first and meeting basic needs.

SO . . . .

First things first.

I am me first, and an illness second.

I am a person, and my ability to express who I am, separate from being ill, is critical to being happy or feeling fulfilled.

If I am feeling unfulfilled, I may behave in ways that express how unfulfilled, thwarted and unhappy I am.

If I go for a long time feeling thwarted, and cannot communicate my feelings, hope, sadness, and occasional feelings of despair, I may express needs in ways that oppress others.

These statements are statements of human nature -- this is a normal way for people to feel when facing sickness and disability. It only makes sense to try to cope with illnesses in this manner.

Teaching Cleanliness

Slowing the Spread of Illness in the Classroom

There are a number of ways a teacher can help children stay well. This is especially important around children who may have impaired immune systems. Every year children die from flu and pneumonia because of poor resistance to opportunistic infections.
Handwashing Wet your hands Add soap Rub your hands to loosen dirt and germs. Wash wash wash for twenty seconds. Scrub those fingernails where germs can hide. Rinse with clean warm water. Dry your hands on a paper towel or with an air dryer. Help children feel excited about doing this and set up times several times a day when children wash hands. Although you have a rule about washing up after the bathroom, chances are children will only occasionally follow through. At the end of each day, consider spraying desks with Lysol.
Sneezing and coughing "C"is for cough and his brother the sneeze. Cover them both with your hand, won't you, PLEASE!
Hugging and kissing We all need strokes and touching, but we minimize illnesses by sticking to hand shakes and smiles between friends.
Sharing snacks and drinks It is wonderful to have a class care about each other and want to share treats and snacks. Help children learn to break off pieces, rather than biting them. Share drinks by pouring some in small dixie cups you keep available in the room.
Pencils and supplies When possible have enough supplies to give each child a personal set that is kept in the desk. Students tend to put things in their mouths, and thus pass on many germs through common pencils, scissors, crayons and workbooks.

Wheelchair Courtesy
Respect the chair as an item of personal equipment that belongs to the student
Offer assistance only if it appears that it will be needed
If appropriate, give personal information about expeditious routes to gain easiest access
When the student transfers to another chair or location, be certain to keep the chair within arm's reach
Think of the wheelchair as a helpful tool. When discussing it, do so as one might discuss a mode of transportation and help make the exchange enjoyable, but do not spend the whole conversation pressing for information about the chair rather than focusing on the child.
An individual USES a wheelchair, but it is not an extension of them, who they are, what they think about all the time -- and certainly, they are not CONFINED to a wheelchair. That same kind of sensitivity to the person rather than the disability includes not spending the whole time speaking about the difficulties, handicap parking, etc.


Student action


Creative solution
Child comes back to school with a "chip" on the shoulder. . . seems to expect special treatment beyond what is prudent or necessary

Student - to deal with anger, find ways of adjusting to the change in self esteem

Teacher - to keep things consistent and support the child who is ill

Class - to feel safe, important and valuable

Increase the level of comfort and safety for the student who is acting out and make a plan to help student normalize feelings and expectations; help class to increase tolerance by helping them understand the actions in a positive frame - ways they self soothe,etc. Teacher - treat the child in as normal a manner as possible. Give care to the needs of the student but also maintain a normal structure and set of practices for
Student becomes angry and lashes out after an apparent petit mal seizure

Student - some students have a burst of rage following seizures

Teacher - keep everyone safe and prevent the student from doing something regrettable

Class - to feel safe and maintain a peer relationship with the student

Set up a system to monitor the student's seizures. If helpful, get the student to watch for an aura or set of occurrences that signals the seizure onset.. Teach other students a set of practices for outbursts and gain the support of another teacher to step in and monitor the class when the child has an outburst.

Fill in the next three cell rows, using the ideas you gain from experience, from materials in the text and in your web searches. Identify a likely student behavior that may hamper learning and then go through the process of defining needs, then finding a solution that allows everyone to get needs met [25 points have been allotted for this activity].

Activity List

1. Read a book written by a family member, telling about their personal insights and challenges. Make a list of the ways a teacher might support the parent experiences. Make a second list of things parents might tell an educator about a child. A good example of a classic is "Death be not proud." [50 points].

2. Locate a parent who will allow you to visit the child at the school or in the home and spend a minimum of 4 hours observing the youngster. As part of the observation experience, identify at least three student strengths. Look for the youngster's interests and determine some of the ways contact points that could be used to engage the student. How does the child feel about the illness. If it is fatal, does the child discuss it? [25 points per hour for observing; 50 points for the adaptation summary].

3. Read one of the books about death and dying by Elizabeth Kubler-Ross. Write an essay discussing the stages she describes. As a summary to the paper, provide ideas for helping students deal with an age mate who is seriously ill. [50 points]

4. Learn about seizure disorders and how to help someone who is having a grand mal or tonic colonic seizure. Try to find an opportunity to watch someone use this with a child. After looking at the pros and cons, develop a paragraph stating your personal feelings about the technique and its usefulness. [25 points]

5. Identify three commonly held fallacies about chronic illness and then provide three fact based beliefs about youngsters who are not well. For example, what are three things people often believe about children with asthma. What are the facts? [15 points] You may want to talk with a youngster who has a chronic illness. Give yourself 25 additional points for interviewing that youth with respect to his or her feelings about that illness.

6. Locate and review one of the Home-schooling programs for children who are ill. In general, do you expect students to do as well when home schooled? What is lost to a child who is not able to attend regular classes? [25 points]. If you find the opportunity to talk with a child who is not able to attend school, write an essay talking about the child's perspectives.

7. Remember to feel free to develop your own personal response to the material. Allot yourself approximately 25 points per hour for your work. It might be very useful to volunteer to work with youngsters in a hospital setting. Keep a journal about your experiences. In particular, focus on the student's responses and the feelings engendered by you close connectedness with childhood illnesses.

8. Many communities have hospice care for those who are terminally ill. Volunteer to help provide hospice care to a youngster who is terminally ill. Work in close contact with the hospice providers. Keep a log and send that as verification of your experiences. [100 points each]

Book List

Brown, C. (1955) My left foot. New York: Simon & Schuster.

Gallagher, H. G. (1994). FDR's splendid deception. New York: Dodd Mead.

Matthews, J. (1992). A mother's touch: The Tiffany Callo story. New York: Holt.

Gunther: Death be not proud

Pecinpah, S. E. (1993). Chester: The imperfect all-star. Agoura Hills, CA: Dasan Publishing.

Stewart, J. (1989). The body's memory: A novel. New York: St. Martin's Press.


Born on the Fourth of July

Lorenzo's Oil


My Left Foot

Site for books on Cerebral Palsy - Reviews

Chapter on a personal story by a person with cerebral palsy


Death be not Proud

You should now:

Go back to Characteristics

Commander Troy says E-mail J'Anne Ellsworth at

Course developed by J'Anne Ellsworth


Copyright © 1999 Northern Arizona University