Title: Children and Juveniles with Rheumatic diseases -school-life-
1Children and Juveniles with Rheumatic
diseases-school-life-
Claudia Grave Gryphiusstr. 2 D- 22299
Hamburg E-Mail claudiagrave_at_gmx.de
2 Rheumatic diseases in children - nobody is
thinking on it!
This is -since a long time- the motto of the
German Rheumatic League in order to give
informations about rheumatic diseases in
childhood and to improve the situation of the
families
3Difficulties in understandig the problems of
children with rheumatic diseases are often being
continued at school. Lack of understanding and
intolerance are discriminating them.
Very often teachers and schoolmates dont believe
in rheumatism in childhood. Morning stiffness,
pain, the necessity of taking drugs or aids are
denied. Rheumatic diseases are seen as harmless,
because signs of a disease are not- or not yet
been seen.
4Not a long time ago s.b. asked me Why are you
feeding your daughter with a lot of food,
allthough she is already very thick. Answering,
that my daughter has arthritis and that she has
to take drugs which leed to thickness, she said
Arthritis in childhood? That cant be true, I
never heard about it! And at all, I cant see
anything!
5- Coming back to school is very important for
children with arthritis as well, because it is
one step back to a normal life - But a lot of children are afraid about this day
- They ask e.g.
- Whats about my schoolfriends, do they still
accept me? - Can they imagine what rheumatism is?
- Will they understand what happened with me?
- What shall I do if they do not understand that I
couldnt walk as fast as before? - Are they willing to support me?
- And- because I missed a lot of schooldays-
whats about my marks?
6Diana told My schoolfriends noticed me getting
thicker and thicker. They said You are really
very thick and you are looking terrible and all
over that your way of walking is looking
rediculous. We assume that you are just putting
it on you couldnt have pain, because you are
cheerful and friendly whole the day! I was very
sad about hearing that!
7A mother reported Benny was pushed downstairs,
because he didnt walk fast enough. The others
were threatening against his knees in order to
move them. And he was staying lonely on the
schoolyard while the others were playing football!
8But not only schoolfriends do not understand
what rheumatism means. Unfortunately teachers
often make school life very difficult, too.
9A mother told Meanwhile arthritis does belong to
our life. Only the school is putting a stroke in
our wheels, again and again! Much more accepted
is that boy with a leg in plaster. Everybody is
considerated against him, teachers as well as
schoolmates. But exactly that seems to be the
problem of arthritis!
10A father told Peter had have a flare up. The
paediatric rheumatologist did allow him going to
school if Peter could be transported to- and
from school and if he could stay at the classroom
during the break. The teacher did ignore it, he
pushed Peter outside. When we asked him why, he
answered Here at school only what I say, goes!
11A mother told The classroom was at the
uppermost floor. When I told the teacher that
Helen should stay at the classroom during the
break he said If you want Helen to be stay
upstairs you have to write down your request
every day again, please!
12The same mother told I will never forget the
class test, when Helen couldnt write anymore,
because of severe pain in his hand. When she
asked the teacher to be allowed to interrupt, she
answered No, you will manage it without
interruption. I cant imagine that you would
like to have a bad mark only because of a little
bit pain in your hand
13A mother told I couldnt get any support.
Nobody was willing to help Ben in case of
changing the classroom or going up- or
downstairs. So I had to go to school several
times per day to help him by myself!
14- I hope, that it is is only a deficit in the
knowledge about effects of rheumatic diseases
when these things happen - Ignorance is also the reason for
- calling children with rheumatism as a shirker or
layabout if they are too late because of
morning stiffness or if they are not concentrated
because of the drugs - sending them to special schools for handicaped
children allthough children with arthritis mostly
can visit regular schools. They do not need more
than a little bit help and understanding
15Therefore enlightenment at school is necessary!!!
16Teachers should know that
- arthritis can be a severe and exhausting disease
- arthritis normally is not life-threatening, but
it acompanies children for many years
(sometimes the whole life) and it forms them. - Children with rheumatism have experienced a lot,
which changed their nature and their attitude to
life.
17Teachers should know that
- Chronic arthritis has effects on all parts of
life - family, friends, kindergarten and school!
- Teachers should focus on it, even if it is
difficult at the beginning.
18Teachers should know that
- Chronic diseases like arthritis can lead to
impairment or slowing down of the development
stage. As earlier arthritis starts as bigger is
the risk of slowing down. - Impairment and slowing down can arise also during
time of adolescence. - The knowlegde of being an outsider influences
the joy of life and the feeling of ones own
worth. - sadness, hopelessness, feeling of inferiority,
aggressions, contrariness or craving for
admiration could be the consequence.
19Teachers should know that
- Sports, besides swimming and biking are mostly
impossible. - Changes of the body, unwanted effects of drugs,
e.g. pseudocushing, hypertrichosis or growth
retardation should be tolerated. - Children with arthritis are more tired also
because of the drugs and often they are not able
to concentrate. - Children with arthritis are not as powerful as
their schoolmates.
20Teachers should know that
- Pain and stiffness is present especially in the
morning. Thats why children need more time and
are sometimes too late at school. Later on they
often feel better and it seems as if there has
nothing been. - Staying at the hospital meens to be separated
from parents, siblings and friends. - Children often think to be a burden for their
family.
21Teachers should know tha
- Stable phases are changing with times of pain
and inmobility.
I never know what will be tommorrow, therefore I
often cannt plan anything. But it is also
difficult to be spontaneously because of all the
drugs and therapies.
22Teachers should know
- Children with rheumatic diseases need a lot more
of energy and self disciplin in order to - adapt every day on the rheumatic disease.
- to absolve al lot of tasks ( consultation at the
paediatric rheumatologist, regular bloodtests,
coldpacks, physio- and occupational therapy and
taking their drugs) besides the normal tasks. - Therefore they are much more burdened than her
healthy friends and leasure time is rare.
23When Luisa is coming from school she urgently
needs a break. Afterwards she has to go for
physiotherapy or she has to absolve the home
training. Finishing afterwards her homework all
her friends are already outside in order to
play. And because of pain in her hands she needs
additional time because she has to rest again and
again. Often it is going on until dinner. But
nobody notices that. Telling this to the
teacher, she replied When she would work more
rapidly, she would finish her homework
earlier! She dosnt accept Luisa to use a laptop
as compensation of her handicap and to avoid
pain.
24Teachers should recognize that rheumatic diseases
in childhood are impressing, longstandig
diseases. Pain, independence, intolerance, lack
of understanding and less time for hobbies are
often leading into isolation. Missing school,
and catching up on subjects leads to an outside
position. All over that the development of the
disease is not predicticable. Deveplopment at
school and profession are uncertain. This leads
to anxiety.
25Therefore we have to inform the teacher about the
disease and the individual difficulties and
teachers should try to demonstrate understanding
and to offer help to the child. In case of
hospitalisation all informations should be given
to the school at hospital by fax or by mail.
26But A father told The problems started when
Alex never got all materials from school.
Copying the teacher 3 sheets, we could be sure
that there were 6-12! We had to fetch the the
others from other parents.
27A mother told School at hospital was not able to
teach our daughter adequately, because there were
no information from school at home. It cant be
expected to our secretary, the teacher said. And
my husband was reprimanded, because the teacher
from the school at hospital asked for
informations at the school at home.
28The first day being back at school, she was
chased upstairs with her crutches. Two friends
who wanted to help her were called on to go away.
Anne was reprimanded to put up her feet
correctly- Arthritis couldnt be so worse!
29But not only the teachers are discriminating our
children but the schoolmates, too. They often are
reacting by keeping silent and expelling them or
by teasing.
30A mother told To round off the daily fight there
are the appreciate schoolmates, who are
listening when Toby is telling about his disease
and why he shouldnt go upstairs. But during the
first crucial situation.they are
calling Grandfather, grandfather!"
31Patricia reports When I returned to school in a
wheel chair after 8 weeks of hospitalisation,
everybody seemed to be full of sympathy. The
classroom was located downstairs and a lot of
friends acompanied me during the breaks. But that
stopped after some weeks! I couldnt participate
anymore and after some weeks I was uninteresting.
It tooks a little bit of time to realize that -
and it hurts!
32When I didnt sit in the wheel chair anymore and
I asked for going home because of pain, they
said I would like to have arthritis,
too! Some of the teachers meant, that they
couldnt allow extras anymore. At some time or
other I had no mind to beg for everything. I
only wanted to be let alone, I wanted to finish
school and to work. I will manage it, but I have
to fight permanently.
33I think by these examples do show obviously
that a lot of negative consequences could be
possible for children with rheumatic diseases at
school.
34It is importatnt to clear up that children with
rheumatic diseases do not receive privilleges,
but only need support, and that means practicall
help.
35Teachers and schoolmates should know about
consequences of rheumatic diseases, especially
those affecting school. It should be talked about
difficulties to be expected and should be decided
together about the needed support.
Possibilities of compensation of the handicap is
very important-because school means future!
36And now I am waiting for your questions and I am
interested in your experiences at school!?