Children and Juveniles with Rheumatic diseases -school-life-

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Children and Juveniles with Rheumatic
diseases-school-life-
Claudia Grave Gryphiusstr. 2 D- 22299
Hamburg E-Mail claudiagrave_at_gmx.de
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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
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Difficulties 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.
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Not 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!
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• 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?

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Diana 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!
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A 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!
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But not only schoolfriends do not understand
what rheumatism means. Unfortunately teachers
often make school life very difficult, too.
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A 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!
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A 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!
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A 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!
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The 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
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A 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!
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• 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

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Therefore enlightenment at school is necessary!!!
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Teachers 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.

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Teachers 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.

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Teachers 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.

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Teachers 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.

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Teachers 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.

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Teachers 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.
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Teachers 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.

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When 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.
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Teachers 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.
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Therefore 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.
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But 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.
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A 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.
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The 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!
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But 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.
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A 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!"
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Patricia 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!
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When 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.
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I think by these examples do show obviously
that a lot of negative consequences could be
possible for children with rheumatic diseases at
school.
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It is importatnt to clear up that children with
rheumatic diseases do not receive privilleges,
but only need support, and that means practicall
help.
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Teachers 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!
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And now I am waiting for your questions and I am
interested in your experiences at school!?