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:
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.
details on AIDS in youth
to information on youth with AIDS and HIV
site for HIV and AIDS
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
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.
and clear summary
story about interest in Epilepsy
Koop cite with links, resources and chat opportunities
aid for tonic clonic seizures
New medication for uncontrolled
Information related to special
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.
asthma and treatments
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
Oncology Site, including
art, research, newest findings
Family support site
Texas Cancer Center
- famous and well regarded facility with state-of- the-art therapies
National Cancer Institute
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.
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
stories of people who have CP
births and CP
,explanations, and discussion of various forms of CP
programs and suggestions
and web ring in Australia
Site for information,
research and support ideas
|Muscular Dystrophy and chronic diseases
that cause deterioration
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.
||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
||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.
||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,
||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
||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
Tips and Strategies
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.
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.
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
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.
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.
. . . .
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.
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
| 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.
|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
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
Class - to feel safe and maintain a peer relationship with the
|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
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
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:
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
Born on the Fourth of July
My Left Foot
Site for books on Cerebral Palsy -
Chapter on a personal
story by a person with cerebral palsy
Death be not Proud
You should now:
Go back to Characteristics
Troy says E-mail J'Anne Ellsworth at
Course developed by J'Anne
Copyright © 1999 Northern Arizona
ALL RIGHTS RESERVED