children and juveniles with rheumatic diseases -school-life-

ENCA Kosice 09-2004 1

Children and Juveniles with Rheumatic diseases

-school-life-

Claudia GraveGryphiusstr. 2D- 22299 HamburgE-Mail: [email protected]


„ 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


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 don‘t 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.


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 can‘t be true, I never heard

about it!

And at all, I can‘t see anything!


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.:

• What‘s 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 couldn‘t walk as fast as before?

• Are they willing to support me?

• And- because I missed a lot of schooldays- what‘s about my marks?


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 couldn‘t

have pain, because you are cheerful and friendly whole

the day!“

I was very sad about hearing that!


A mother reported:

Benny was pushed downstairs, because he didn‘t 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!


But not only schoolfriends do not understand what

rheumatism means.

Unfortunately teachers often make school life very difficult,

too.


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!


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!“


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!


The same mother told:

I will never forget the class test, when Helen couldn‘t 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 can‘t imagine that you would like to have a bad mark

only because of a little bit pain in your hand“


A mother told:

I couldn‘t 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!


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


Therefore enlightenment at school is necessary!!!


• 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.

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.



• 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 one‘s own worth.

• sadness, hopelessness, feeling of inferiority,

aggressions, contrariness or craving for admiration could

be the consequence.



• 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.

Teachers should know that


• Pain and stiffness is present especially in the

morning. That‘s 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.



• Stable phases are changing with times of pain and

inmobility.

I never know what will be tommorrow, therefore I often

cann‘t plan anything.

But it is also difficult to be spontaneously because of all

the drugs and therapies.

Teachers should know tha:


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.

Teachers should know:


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 dosn‘t accept Luisa to use a laptop as compensation of her handicap and to avoid pain.


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.


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.


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.


A mother told:

School at hospital was not able to teach our daughter

adequately, because there were no information from

school at home.

„It can‘t 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.


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 couldn‘t be so worse!“


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.


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 shouldn‘t go upstairs.

But during the first crucial situation.they are calling:

„Grandfather, grandfather!"


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 couldn‘t participate anymore and after some weeks I was

uninteresting. It tooks a little bit of time to realize that - and

it hurts!


When I didn‘t 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 couldn‘t 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.


I think by these examples do show obviously that

a lot of negative consequences could be possible

for children with rheumatic diseases at school.


It is importatnt to clear up that children with

rheumatic diseases do not receive privilleges, but only

need support, and that means practicall help.


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!


And now I am waiting for your

questions and I am interested in

your experiences at school!?

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