The Special Needs of Children
By Vicki L. Carpman
in The CFIDS Chronicle Spring
Living with chronic
immune dysfunction syndrome (CFIDS) is difficult for all persons with CFIDS
(PWCs), as well as their family and friends. However, no group is more severely
affected than children who have the disease.
The lessons learned in childhood are
we carry with us throughout life. Knowledge gained from schooling; experience
accumulated from interacting with teachers, peers and younger kids; and
perceptions of our own abilities--our self-esteem--are some of the many
childhood lessons which influence and shape our futures.
Yet children and adolescents with chronic
illnesses like CFIDS miss many of these experiences. It is the responsibility of
parents, educators, medical personnel and peers to ensure that children with
CFIDS enter adulthood furnished with the tools which will give them, like
healthy children, a fair opportunity for success and happiness.
In an effort to educate school officials
about their role in this process, the Connecticut CFIDS Association cosponsored
a one-day workshop for teachers, administrators and school nurses on March 1,
1995. Other sponsors were the Connecticut Department of Public Health and
Addiction Services and the Connecticut Department of Education.
This workshop, the first of its kind,
resulted from legislation
passed in June
1993 which mandated that the state health department educate the community about
CFIDS. Although the legislation did not specifically address the need to educate
school officials about CFIDS, input from the local adolescent CFIDS support
group prompted leaders of the Connecticut CFIDS Association to focus
implementation of the legislation on the special educational needs of children
The workshop began with a tutorial
diagnosis and physical characteristics of CFIDS. David Bell, MD, the nation's
leading medical expert on pediatric CFIDS, described the four primary physical
symptoms of the disease, which he described as "cohesive" and "specific":
fatigue, pain, cognitive deficits and environmental sensitivities.
Level of fatigue can be ascertained by
comparing the number of hours a child is active (watching TV, studying,
attending school, playing games or sports, etc.) to inactive (sleeping or
resting) each day. In healthy children, the ratio of active to inactive is
approximately 1:1 (12 hours active, 12 hours inactive). Children with CFIDS
spend less than eight hours each day in activity (and none in vigorous
activities like sports); severely ill children can only remain active for four
hours per day and are unable to attend school.
Pain may include headaches, stomachaches
and muscle and joint pain. Dr. Bell has found that the severity of pain often
parallels the level of fatigue.
Judging cognitive deficits in children can
be very difficult, especially with younger kids. Because they have not had time
to determine their true abilities and often have an unclear perspective of
"normalcy," children often can't pinpoint extraordinary problems they are having
with schoolwork (as opposed to the ordinary problems experienced by their
healthy peers). If psychometric or intelligence assessments have been previously
made, these tests can be repeated to discern abnormalities (see Cognitive
Environmental sensitivities which develop
with CFIDS can include increased problems with light, noise, temperature, odors,
drugs and foods and worsening of pre-existing allergies.
Treatment, or "illness management," as Dr.
Bell prefers, for the 30 percent of PWCs who are adolescents or children, should
include physical, emotional and educational support and symptomatic treatment.
Alan Gurwitt, MD, a Boston
specializes in treating children with CFIDS, stated that the psychiatric
problems which plague PWCs are caused by the disease, and not vise versa, as
many erroneously believe. CFIDS affects the limbic system and the cerebral
cortex in the brain. These organic abnormalities may, in themselves, cause
However, the grief PWCs feel as a result of
being deprived of formerly enjoyable activities, alienated from friends,
stripped of cognitive abilities, unable to plan for the future and forced to
cope with the sheer physical pain of CFIDS is not unexpected. All persons with
CFIDS mourn the loss of their former lives, but these effects in children with
CFIDS can permanently harm life-long self-esteem and self-perception, which are
forged during these formative years.
Dr. Gurwitt emphasized children's need to
have normalcy in their lives. They need to have "normal" childhood experiences,
such as attending school dances, participating in field trips and socializing
with friends. He warned that participating in these activities may exacerbate
CFIDS symptoms, but asserted that the chance to have normal experiences may, in
some cases, be worth the relapse. He advised educators not to punish a child for
being ill, rather to create opportunities for the student to participate when he
or she is able.
Dr. Gurwitt's comparison of psychiatric illnesses and
Cognitive testing must be conducted by a
compassionate clinician who is familiar with CFIDS and/or chronic illness in
general, said Robert Sedgwick, EdD. Dr. Sedgwick cautioned educators that
fatigue confounds evaluation, thus he recommended that doctors utilize a
student's "window of opportunity," the time of day in which he or she feels
best, to perform assessment.
The Wechsler Intelligence Scale for
Children (WISC)-III can be used to assess a student's cognitive status. No hard
patterns have been determined which signal CFIDS. Children with CFIDS frequently
have decreases in verbal IQ and attention and concentration, yet performance IQ
does not seem to be affected as much. Dr. Sedgwick advised that, in the case
where no pre-illness scores are available for comparison, performance IQ may be
used to estimate previous abilities on other scales.
In addition, the presence of CFIDS does not
exclude a child from having other, pre-existing learning disabilities. If a
child has been diagnosed with an attention deficit, language or other disorder,
this must be addressed in addition to the problems caused by CFIDS.
See Dr. Sedgwick's
list of tests that may be useful in establishing a CFIDS student's educational
Although the morning session, which
provided workshop attendees with the nuts and bolts of the disorder, was
essential, true understanding was established by a mid-day session which gave
those living with CFIDS an opportunity to describe their experiences. Six
adolescents with CFIDS and the mother of two of these children spoke for 45
minutes about how it really feels to have CFIDS.
The kids related the problems of trying to
keep up with schoolwork and attempting to maintain social relationships even
though they are too ill to attend school; combating the disbelief of teachers
and students (fighting the "but you don't look sick" reactions); trying to fit
in with their peers; and dealing with the unpredictability of their health and
the havoc it wreaks on their cognitive abilities.
The mother of two boys who became acutely
ill with CFIDS four years ago, described the lengths to which she and her
husband have gone to minimize their sons' losses and continue their education. In
the first 18 months of their illness, she and her husband had to read their
sons' textbooks aloud to them. But, since each boy was only able to concentrate for
a short period of time, they would read to one for 10 minutes and
then allow him to rest while they read to the other for 10 minutes, going
back and forth between the boys. Since one child was unable to walk the long
halls of his high school without experiencing mind-numbing fatigue, she would
meet him after each class and drive him to the doorway nearest the next
Miraculously, all of the
children on the panel continue to keep up with their schoolwork and most
are getting excellent grades. One, a high school senior, will graduate this spring, likely
as valedictorian of his class, and has been accepted to his first-choice
university. Nicole, a 16-year-old, continues to make the honor roll even though
she is too ill to attend school and depends upon a tutor.
An audience member commented that the
adolescents on this panel all have chosen to expend their limited energy on
schoolwork over social activities. When asked why this decision was made, Todd
Dyer, a 17-year-old, said "education is the most important thing. You have to
hope that you're going to get better and in five years, if you just tried to
socialize with your friends and you're not finished with high school, how much
fun is that going to be?"
The afternoon session focused
on ways the
school system can make accommodations to educate students with CFIDS. The
Education of the Handicapped Act (Public Law 94-142) was enacted in 1975 and
amended in 1986 (PL 99-457) "to ensure that all children with disabilities would
have a free, appropriate public education which would meet their individual
needs."(1) In 1990, the law was again amended and its name changed to the
Individuals with Disabilities Education Act (IDEA).
Elaine Brainerd, RN, MA, CSN stated that
children with CFIDS may qualify for special services under IDEA or Section 504
of the Americans With Disabilities Act (ADA).
IDEA provides additional federal funding to
schools for educating students with one or more of 13 listed conditions. PWCs
may qualify under other health impaired: "having limited strength, vitality or
alertness due to chronic or acute health problems which adversely affect a
child's educational performance." Students who are eligible receive an
Individualized Education Plan (IEP) written by a multidisciplinary IEP team.
Section 504 protects the rights of
handicapped/disabled children to a free and appropriate education, including
special accommodations as needed. To be eligible for the program, students must
have an impairment which substantially limits one or more major life activities.
Many conditions not covered under IDEA will qualify for Section 504 protection.
No additional funding is awarded to schools educating children under Section
504, which is essentially a very broad piece of civil rights legislation. Like
IDEA, Section 504 requires that an educational plan be created for each eligible
Dr. Robert Sedgwick reported that, when
faced with an unknown problem (like CFIDS), schools often rely upon a "moral"
model of intervention, which assumes that human willpower is strong enough to
prevent and overcome problems (this is the "just say no" model). Unfortunately,
this often unwittingly places blame on a student who is unable to compensate for
a disabling condition.
Both Ms. Brainerd and Dr. Sedgwick
commented on the difficulty the traditional school system has in accommodating
the needs of students with CFIDS. Solutions to these problems include treating
students as individuals, setting less rigid attendance policies, allowing extra
time for tests and assignments, permitting make-up work, involving the student
in scheduling, providing the student with a syllabus or schedule of upcoming
assignments so he or she can keep up with the class when unable to attend
Richard P. Prunty, EdM, CAGS is a high
school guidance counselor who helped create and implement an IEP for a girl with
CFIDS. Some of the accommodations made for this student included: providing van
transportation to school and access to the school's elevator; setting flexible
class schedules and assignment deadlines; furnishing a tutor and an extra set of
textbooks for her home; and allowing her to graduate without taking physical
Because of her reduced class schedule, this
student may not graduate from high school in the traditional four years, said
Mr. Prunty, but she will get complete access to the educational system and will
be well-prepared for her future.
This workshop was extremely successful in
educating over 150 educators and school nurses about the special needs of
children with CFIDS. As one workshop attendee commented, educators know what to
do to make accommodations for students with CFIDS because they do it every day
for children with asthma and other chronic illnesses. What educators need is to
learn about CFIDS.
1. Pamphlet: Disabilities which qualify
children and youth for special education services under the Individuals with
Disabilities Education Act (IDEA). Produced by the National Information Center
for Children and Youth With Disabilities (NICHCY). For more information, write
PO Box 1492, Washington DC 20013-1492; or call 800/695-0285.
chronic fatigue and immune dysfunction syndrome June 28, 1993
|Be it enacted by the
(Connecticut) Senate and House of Representatives in General Assembly
The commissioner of health
services shall implement, using existing resources, state-wide
informational outreach programs on chronic fatigue and immune dysfunction
syndrome. The programs shall include medical and patient education
programs and public awareness campaigns.