Children and Juveniles with Rheumatic diseases -school-life-

1. Children and Juveniles with Rheumatic diseases-school-life- Claudia Grave Gryphiusstr. 2 D- 22299 Hamburg E-Mail: claudiagrave@gmx.de ENCA Kosice 09-2004

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 ENCA Kosice 09-2004

3. 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. ENCA Kosice 09-2004

4. 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! ENCA Kosice 09-2004

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.: • 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? ENCA Kosice 09-2004

6. 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! ENCA Kosice 09-2004

7. 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! ENCA Kosice 09-2004

8. But not only schoolfriends do not understand what rheumatism means. Unfortunately teachers often make school life very difficult, too. ENCA Kosice 09-2004

9. 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! ENCA Kosice 09-2004

10. 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!“ ENCA Kosice 09-2004

11. 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! ENCA Kosice 09-2004

12. 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“ ENCA Kosice 09-2004

13. 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! ENCA Kosice 09-2004

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 ENCA Kosice 09-2004

15. Therefore enlightenment at school is necessary!!! ENCA Kosice 09-2004

16. 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. ENCA Kosice 09-2004

17. 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. ENCA Kosice 09-2004

18. 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 one‘s own worth. • sadness, hopelessness, feeling of inferiority, aggressions, contrariness or craving for admiration could be the consequence. ENCA Kosice 09-2004

19. 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. ENCA Kosice 09-2004

20. 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. ENCA Kosice 09-2004

21. Teachers should know tha: • 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. ENCA Kosice 09-2004

22. 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. ENCA Kosice 09-2004

23. 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. ENCA Kosice 09-2004

24. 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. ENCA Kosice 09-2004

25. 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. ENCA Kosice 09-2004

26. 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. ENCA Kosice 09-2004

27. 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. ENCA Kosice 09-2004

28. 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!“ ENCA Kosice 09-2004

29. 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. ENCA Kosice 09-2004

30. 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!" ENCA Kosice 09-2004

31. 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! ENCA Kosice 09-2004

32. 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. ENCA Kosice 09-2004

33. I think by these examples do show obviously that a lot of negative consequences could be possible for children with rheumatic diseases at school. ENCA Kosice 09-2004

34. It is importatnt to clear up that children with rheumatic diseases do not receive privilleges, but only need support, and that means practicall help. ENCA Kosice 09-2004

35. 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! ENCA Kosice 09-2004

36. And now I am waiting for your questions and I am interested in your experiences at school!? ENCA Kosice 09-2004