Calen's Story: A Child's Journey
By Karen Lang
Originally published in The CFIDS
"I want to be back in
school, with my friends. I want to be a normal kid again."
- Calen, 13
My son, Calen, and I have chronic fatigue
and immune dysfunction syndrome (CFIDS), a mysterious disease involving
derangement of the immune system whose cause and cure are still under
investigation. Like most people who have CFIDS, we have been through the mill
looking for a knowledgeable physician. The problems I've encountered have been
easier to bear than my son's. Because I am an adult, I have the authority and
the life experience to fight my own battles, even though I may lack the stamina
to do so. Calen hasn't been as lucky - he's a kid. It is a reality that puts him
at the mercy of the adults who make the decisions that affect his life. This is
Calen's story. It is dedicated to every kid who suffers from CFIDS and who
struggles to be heard, listened to and helped.
Coming Down With It
Calen is now 14. When he was seven, he came down
with what the specialists thought was Kawasaki's disease - a frightening,
little-understood viral-like episode that lasts for several weeks with spiking
high fevers, severe myalgias and arthralgias, abdominal pain, rashes and intense
headaches. During the sub-acute phase that follows and lasts for a month or two,
when the fever goes down and the child seems to be doing better, the danger
arises for the development of aneurysms in the blood vessels. The real fear is
of coronary aneurysms, which can kill if they should rupture. Up to 20 percent
of Kawasaki's kids develop aneurysms in the coronary artery. Most make it
through, but some don't.
As with CFIDS, the cause of Kawasaki's is
still not known. The primary treatment for the disease is large doses of
intravenous gamma globulin, with aspirin to thin the blood. Calen had most of
the markers for the disease, but not all. The doctors decided he fit the
diagnosis closely enough and treated him for the disease. He seemed to recover
after a few months, but couldn't completely shake the headaches and abdominal
His pediatrician was puzzled by the
recurrent intense headaches and stomachaches that continued to plague him
several years after he'd gotten over Kawasaki's. He ordered an EEG and an
ultrasound of the abdomen to try to determine what might be causing Calen's
symptoms. Both came back normal. Concerned that Calen might be suffering from
school stress, he cautioned us to be on the lookout for signs of school phobia.
He warned us that letting Calen stay home if all he had was a headache or
stomachache might encourage the development of serious social and psychological
In November 1990, when he was 11, Calen
came down with strep throat. Two weeks later, he tested positive for
mononucleosis. We kept him home through Christmas and sent him back to school in
early January. He was back in bed in two days, exhausted, myalgic, feverish and
sick. We followed this pattern - back to school for one or two days, in bed sick
and exhausted for a week or two - for several months. Epstein-Barr virus (EBV)
titers, checked in May, showed that he had chronic active EBV. The pediatrician
said, "I know very little about this disease. All I can really tell you is to
let him rest. I don't know how long he'll be this way. Let's look at him again
before school starts in September."
Between November 1990 and June 1991, Calen
missed all but about 10 days of school. He had attended a private Christian
school since preschool and the staff knew him well. We all knew there was
something physically wrong because the change in him was so dramatic. At one
point, his blood was tested to see if he had leukemia. No one knew quite what
the problem was, and none of us knew how to handle it.
There are unwritten rules we parents go by,
like the one about sending your kids to school when they complain of headaches
or stomachaches, as long as they are not running a fever or throwing up, and the
doctor can't find anything wrong. These rules no longer held and there were no
new ones we could follow.
In June 1991, Calen and I saw a friend in the
parking lot at the bank. He asked how we were doing, and for some reason,
instead of saying "fine," I told him about Calen's problems. When I mentioned
chronic EBV, he said "If someone is saying he has chronic Epstein-Barr, I know
what his problem is. And, I know who he should see." It turned out that our
friend had been sick with CFIDS for more than nine years and was part of the
original cluster outbreak at Lake Tahoe in 1984. Through him, we found a
compassionate and knowledgeable physician, Dan Peterson, who diagnosed and set
up treatment programs for both of us.
Calen was given a formal diagnosis of CFIDS
in August 1991. Dr. Peterson ordered rest and a reduced school schedule for him,
with no medication except acetaminophen (Tylenol) at first. His exposure to
various drug therapies was kept minimal so that his normal physical growth and
development would not be compromised.
As autumn set in, he began catching every
virus that came along. He was miserable and not making any progress toward
recuperation. Dr. Peterson told him about a boy in Southern California who had
received a 10-week course of intramuscular (IM) gamma globulin injections of 5
cc weekly and was able to return to school and sports. He asked Calen if he'd
like to see if it would work for him. They talked about the discomfort involved
in weekly injections and about the benefits of feeling better if it worked.
Calen agreed to try it and together they worked out the treatment plan. About
three weeks into therapy, Calen began to show a little of the sparkle he had
lost. He continued to improve after he finished the course of treatment. He was
not completely well, but he was feeling and looking better than he had during
the previous 12 months.
In the fall of 1992, we noticed a similar
pattern of viral vulnerability beginning again. He went back on 5 cc of IM gamma
globulin weekly from October through the following June, and was able to attend
school on and off on a part-time basis.
Home Schooling and the School District,
Dr. Peterson recommended
home schooling to be provided by the school district for the spring of 1992 in
order to give Calen more opportunity to rest and recuperate. It meant pulling
him out of the private school and enrolling him (on paper, at least) in the
public school district. We were told by the district that he would not be able
to have any contact at all with his private school. He couldn't visit his old
classroom and classmates, nor could he work with the reading specialist at his
old school site. Any contact with his private school, we were told, would render
him ineligible for the home schooling program.
Having this avenue of social contact cut
off was very difficult for Calen. We live on a farm 20 miles out of town and
there are no kids around for him to socialize with. As he felt increasingly cut
off from the world around him, he became more and more withdrawn. He didn't want
to go anywhere - to town, out to eat, even to watch the Sacramento Kings
basketball games. Noises bothered him, strange places bothered him, crowds
One day, his dad and older brother talked
him into going to Grandma's house with them. On the way home, they stopped at a
fast food restaurant for lunch. Calen flatly refused to leave the pickup truck.
He ignored their attempts to get him out of the truck and waited by himself in
the parking lot until they finished their lunch inside.
Calen's increasing withdrawal alarmed us.
We called Dr. Peterson and told him what was happening He agreed that Calen
needed an activity that would give him regular social contact with kids his age.
Calen settled on baseball, a physical activity that would not be too tiring, but
would give him a fairly normal 12-year-old's experience. His dad was the team
manager and he played when he felt able. He missed a few games and practices,
and often only played one or two innings, but he finally had some opportunities
for much-needed social growth and development.
A couple of weeks after baseball season
started, the school nurse came to the house for a visit. She asked if Calen was
playing baseball. I told her he was and explained why. The district's position
was that if he felt well enough to play baseball, then surely he was well enough
to return to school. The nurse told me that the district did not feel it was
necessary to serve Calen anymore.
"Oh boy," I thought, "this is where
meets shove." I leaned over the table toward her and said, "The decision to
serve, or not to serve Calen's needs is not mine, nor yours, nor the district's
to make. It is his doctor's decision. If his doctor determines that Calen
needs home schooling, then my husband and I are prepared to take any measures
necessary, including legal action, to ensure that our son's academic needs will
Two days later, the district secretary
called to set up a meeting for the following week. We all - parents, student,
school nurse, school psychologist, reading specialist, district representative
and resource teacher - discussed Calen's need for proper socialization. Once
they were assured that we weren't abusing their services, that Calen would
prefer school and sports to being isolated at home, we were able to establish an
atmosphere of cooperation.
With Dr. Peterson's recommendations,
up a program of part-time school and part-time home instruction provided by the
district in order to meet Calen's academic and social needs for the school year
1992-93. He attended school from 12:30 to 3:00 pm daily when he could, and
worked with a home teacher three mornings a week. Things were by no means
normal. He still missed over half of the school year due to relapses, but he did
better psychologically, socially and academically than he had the previous
Looking Ahead ...
As we came to the end of summer 1993, Calen was
doing well. His strength and stamina had improved and he had been symptom-free
for several months - no headaches or stomachaches, fevers, sore throats or
paralyzing fatigue. He was anxious to get back to his friends and a normal
Dr. Peterson gave him the green light to
return to his adolescent world, but with a few words of caution for us all - "He
needs to be allowed to do, but not to overdo."
As parents, we were faced with a delicate
task: to encourage him to do what he could while watching to see that he didn't
overextend to the point of failure. He needed to be able to think like a healthy
kid again, trying to do whatever seemed good and reasonable, not like a
chronically ill kid, whose limits restricted his freedom to grow. Too much worry
on our part would interfere with his critical task of building self-esteem and
finding a comfortable place among his peers.
We knew he'd have some formidable obstacles
to overcome. Having lost the better part of three years of learning, he would be
trying to catch up while simultaneously trying to stay up with the demands of
school. He also had to deal with the cognitive dysfunction that accompanies
CFIDS - problems with memory, concentration, processing skills, word and thought
retrieval and basic math calculations that can linger long after the physical
signs of the disease have passed.
We were ready for these challenges as Calen
started back to school in the fall.
... And Falling Back: Home Schooling and
the School District, 1993
October, it was clear that he could not handle a normal school schedule. He had
already missed 22 of the first 30 days with headaches, stomachaches and a virus
he caught the second week of school. We reapplied to the school district for
home instruction. Once again, we took him out of his private school and enrolled
him in the public school system. Our request, which included Dr. Peterson's
order for home instruction and his letter explaining Calen's medical disability,
I learned of the denial when I called
secretary a week or so later to ask why no one had phoned or written to start
home schooling. She said Calen was ineligible because he had used the home
instruction program the year before. Home instruction, she explained, is
intended only for short-term use. I asked her what program was available for the
kids who are chronically ill, where neither death nor a return to good health
brings about an end to their need for special services. She said she wasn't
qualified to answer my questions.
The assistant superintendent of student
services was not in, so I asked the secretary to give him a message. "Listen
carefully," I said, "for this is important. Tell the assistant superintendent
that Calen is entitled to an education and that the district is mandated by
federal law to provide it. I know the federal law. It is Public Law 94-142, the
Education of All Handicapped Children Act of 1975. The section that applies to
Calen is 504, 'Otherwise Health Impaired.' I have a copy of it before me. My
husband and I are prepared to take legal action, if necessary, to ensure that
Calen's academic needs are met." I spoke slowly, as if I were giving critical
instructions to one of my kids.
The assistant superintendent returned my
call that afternoon. To my amazement, he held to the argument that Calen had
used the program the year before and that it was not intended for an indefinite
period of time. "So what program do you have for him?" I asked. He recommended
that we apply for a transfer to another district in the county that had a
program he was sure would meet Calen's needs. We filled out the necessary
paperwork and the interdistrict transfer process began.
Two weeks later I contacted the other
district for an update. Calen's name was not on anyone's list and no one knew of
any program that would fit his needs. Even if they did have an appropriate
program, the second district was not sure it wanted to spend its money on our
district's educational problems.
I called the legal and special education
departments at the California State Department of Education to find out what
Calen's rights were. I was told that he was entitled to receive educational
services at home if his medical problems prevent him from functioning normally
in a regular academic environment. I was also told that if the district drags
its feet in responding to our request for their services, I should ask for a due
process hearing, to be conducted by independent legal counsel, at the district's
Empowered with this information, I
the assistant superintendent again and told him that the other district did not
have anything better to offer Calen than our district did. In addition, they
were not willing to take on the responsibility of providing services for Calen
when our district could offer him the same home schooling program. I took a
breath, exhaled slowly, and said, "You should be advised that I have been in
touch with the legal department at the state Department of Education and I know
what Calen's rights are. He is protected by PL 94-142, Section 504. I have the
law, the section and the interpretation in my hands." There was a short pause
and then he answered, "Let me do some checking and get back to you."
He called me back two days later. He had
contacted the U.S. Centers for Disease Control and learned that the disabilities
Calen had as a result of CFIDS did, indeed, make him eligible for Section 504
services. He agreed to restart the program Calen used the previous year until we
could develop something more appropriate to his needs. We set a date in early
January 1994 to meet with the school nurse, psychologist and resource specialist
to determine his academic and developmental needs, and to put together a program
that meets them.
Coming to Terms With the Disease
everything about our lives, whether we have the disease or love someone who
does. Goals and dreams change, as do the ways in which we see others and
ourselves. Activities must be carefully planned, tentatively and always subject
to change. Friends and families find themselves assuming more responsibilities
in relationships and in the home, and sooner or later children in the family
learn that life is not always fair. We adjust, ill and well alike, by making
changes, by finding new or different ways of doing things.
The last few years have been a time
learning for everyone in our family - learning to accept situations that are
less than perfect, learning to be flexible and open to alternatives, learning to
be masters at the give-and-take of daily life.
Calen has had to let go of some activities,
modify some and try some that are new. Playing basketball, for example, is out
of the question, but baseball doesn't take as much energy. Instead of feeling
sorry for himself because he can't play in the city basketball league with his
friends during the winter, he works on his hitting, throwing and fielding skills
year-round, and looks forward to the start of baseball season in the
He is learning to recognize and respect
physical limits, even though it is painfully difficult for him as an adolescent
to do anything that draws attention to him or sets him apart from his peers. One
day, his physical education class ran three miles and was timed. He was too
embarrassed to tell the teacher he didn't think he should run the distance, so
he ran and spent the next two weeks at home in bed. It was a valuable
experience, for it taught him that he is ultimately responsible for deciding
what he can and cannot do. He is getting better at telling teachers and friends
when he needs to stop or take a break, and is finding that he can do many of the
things his friends can do, as long as he remembers where to draw the
Kids With CFIDS Need Advocates
Calen's story is not
unique. Unfortunately, it isn't over yet, either. Because of the cognitive
deficit he has experienced with the illness, his academic future is at risk,
even if he makes it past the physical disease of CFIDS.
CFIDS kids have great difficulty finishing
school. Many settle for a General Education Diploma (GED) instead of achieving a
high school diploma. Others completely drop out before graduating because the
cognitive, social and physical energy requirements of high school and
adolescence are too much. What a waste, not only for the kids and their
families, but for society, which will lose their productivity if something is
not done to help them.
This disease is hell for anyone, but
particularly devastating for kids who must develop the social
and psychological skills during adolescence that will serve them through their
adult lives. If the disease catches them before they have the chance to learn
these skills, it may interfere with their ability to develop them at
What do these kids need?
They need to be taken seriously by
doctors, teachers and others, and not to be written off as manipulative, lazy,
emotionally disturbed or school phobic. The danger of suicide is great for
youngsters whose complaints of illness and academic breakdown have been
invalidated and brushed off for years by the very adults who most influence
their lives. When told repeatedly that there is nothing physically wrong with
them, that their problems are the result of laziness or a bad attitude and that
they do not, and probably never will, amount to anything, sooner or later they
come to believe it. How many adolescent suicides may actually be undiagnosed
CFIDS kids who have lost the battle to be heard, acknowledged and
They need to be listened to. It is
ignore the advice of educators and pediatricians who tell us that their
complaints of malaise and dysfunction are signs of manipulative or antisocial
behavior, and who admonish us to be tough and make them toe the line. After all,
these are the experts to whom we have always turned for advice. But when our
children have CFIDS, we must learn to listen to and accept what they tell us
about what they can and cannot do. Acknowledging and validating their complaints
relieves the pressure they feel to prove that they are really sick. The energy
they have wasted trying to justify how they feel can now be used for the more
important job of healing.
They need advocates, people like you
who are willing to fight with them and for them to educate and enlighten the
community to the physical and cognitive challenges they face. It is their bad
luck to be kids with this disease. Society does not listen very well to their
voices, nor does it respond very well to their needs. They cannot fight the
battle by themselves.
By insisting that their complaints
illness be taken seriously, that their educational and medical needs be
acknowledged and accommodated, that doctors and other health professionals learn
about CFIDS and the methods that already exist by which it can be diagnosed and
treated, and that health policy-makers make CFIDS a national health priority and
direct funding for research into its cause, treatment and cure, we can help many
kids like Calen get past their time of illness and back to their friends, their
schools and their crucial time of growth and development.
Tips for Dealing With the School District
Working with an
obstinate school district can present a challenge, but it isn't an impossible
task. Here are a few points that may be helpful for parents and others who are
working on the CFIDS student's behalf:
Approach the district with an attitude of
cooperation, but with the knowledge that your CFIDS student is entitled to
special services under Section 504 of PL 94-142.
Don't be afraid to get tough if you need
to. Remember that the student has the benefit of the doubt if there are any
problems. He/she is eligible for a number of different services. Some, the
district may not know about, and some it may hope you won't find out about.
Services include access to counseling, physical therapy, social work services,
transportation (if needed) and a variety of mechanical aids such as calculators,
computers and tape recorders so that disabled students can function more easily
and on a more equal basis with non-disabled children at their grade level.
Ignorance of what is available, lack of time and lack of money may be the
district's concerns, but your child's academic and emotional growth and
development are yours. Keep in mind that you are negotiating your child's
Don't hesitate to contact either the
assistant superintendent in charge of student services or the district
superintendent, if you find you are getting nowhere with their lower-level
Gather as much information as you can
before dealing with the district so that you are prepared to counter arguments
in the event that your child is initially ruled ineligible for district
Information Center for Children and Youth with Disabilities
(NICHCY), P.O. Box 1492, Washington DC 20013,
800/999-5599. NICHCY is an organization that provides resources for specific
questions (CFS is in its database), referrals to other organizations, packets
and lists of publications. I received a free packet which included a copy of the
Americans with Disabilities Act of 1973, with revisions since then, including PL
94-142, and an explanation of Section 504, the part that applies to CFIDS kids.
It has been a valuable resource.
Protection and Advocacy, Inc
. is another excellent resource. It is a non-profit federal agency that
provides a variety of free legal services for the disabled, including Section
504 children. The organization has regional offices - check the business white
pages in the phone book for the telephone number or the listings under the
Department of Health and Human Services in the Federal Government
Finally, do not forget that your state
Department of Education has important resources and information. When I told the
assistant superintendent that I had been in touch with the legal branch of the
state Department of Education about Calen's rights, the change in his approach
to the problem was remarkable.
Above all, believe your child. Be prepared.
Be empowered by the information and support services that are available to you.
Be diplomatic, but firm in your dealings with representatives who may be
ignorant or stubborn in their views. Beware of experts who warn of behavior
problems. Be willing to share what you learn about working the system with
others who follow.
And be assured that your efforts will help
to ease the journey for all our CFIDS kids and their families.